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Impact factor: 1.333 5-Year impact factor: 1.384 Print ISSN: 0269-9702 Online ISSN: 1467-8519 Publisher: Wiley Blackwell (Blackwell Publishing)

Subjects: Ethics, Social Issues, Biomedical Social Sciences

Most recent papers:

  • Ectogenesis, abortion and a right to the death of the fetus.
    Joona Räsänen.
    Bioethics. October 18, 2017
    Many people believe that the abortion debate will end when at some point in the future it will be possible for fetuses to develop outside the womb. Ectogenesis, as this technology is called, would make possible to reconcile pro‐life and pro‐choice positions. That is because it is commonly believed that there is no right to the death of the fetus if it can be detached alive and gestated in an artificial womb. Recently Eric Mathison and Jeremy Davis defended this position, by arguing against three common arguments for a right to the death of the fetus. I claim that their arguments are mistaken. I argue that there is a right to the death of the fetus because gestating a fetus in an artificial womb when genetic parents refuse it violates their rights not to become a biological parent, their rights to genetic privacy and their property rights. The right to the death of the fetus, however, is not a woman's right but genetic parents’ collective right which only can be used together.
    October 18, 2017   doi: 10.1111/bioe.12404   open full text
  • The ethics of public policy RCTs: The principle of policy equipoise.
    Douglas MacKay.
    Bioethics. October 11, 2017
    In this article, I ask whether a principle analogous to the principle of clinical equipoise should govern the design and conduct of RCTs evaluating the effectiveness of policy interventions. I answer this question affirmatively, and introduce and defend the principle of policy equipoise. According to this principle, all arms of a policy RCT must be, at minimum, in a state of equipoise with the best proven policy that is also morally and practically attainable and sustainable. For all arms of a policy RCT, policy experts must either (1) reasonably disagree about whether the trial arms are more effective than this policy, or (2) know that they are.
    October 11, 2017   doi: 10.1111/bioe.12403   open full text
  • Moral bioenhancement and agential risks: Good and bad outcomes.
    Phil Torres.
    Bioethics. September 18, 2017
    In Unfit for the Future, Ingmar Persson and Julian Savulescu argue that our collective existetial predicment is unprecedentedly dangerous due to climate change and terrorism. Given these global risks to human prosperity and survival, Persson and Savulescu argue that we should explore the radical possibility of moral bioenhancement in addition to cognitive enhancement. In this article, I argue that moral bioenhancements could nontrivially exacerbate the threat posed by certain kinds of malicious agents, while reducing the threat of other kinds. This introduces a previously undiscussed complication to Persson and Savulescu's proposal. In the final section, I present a novel argument for why moral bioenhancement should either be compulsory or not be made available to the public at all.
    September 18, 2017   doi: 10.1111/bioe.12389   open full text
  • Autism, theory of mind, and the reactive attitudes.
    Kenneth A Richman, Raya Bidshahri.
    Bioethics. September 15, 2017
    Whether to treat autism as exculpatory in any given circumstance appears to be influenced both by models of autism and by theories of moral responsibility. This article looks at one particular combination of theories: autism as theory of mind challenges and moral responsibility as requiring appropriate experience of the reactive attitudes. In pursuing this particular combination of ideas, we do not intend to endorse them. Our goal is, instead, to explore the implications of this combination of especially prominent ideas about autism and about moral responsibility. These implications can be quite serious and practical for autists and those who interact directly with autists, as well as for broader communities as they attend to the fair, compassionate, and respectful treatment of increasing numbers of autistic adults. We find that these theories point to a limited range of situations in which autists should not be blamed for transgressive actions for which neurotypical individuals should be blamed. We build on what others have written on these issues by bringing in a recent cognitive model of the role theory of mind plays in empathy, by discussing the social implications of the theoretical findings, and by raising questions about the compatibility of reactive attitude theories of moral responsibility with the neurodiversity approach to autism.
    September 15, 2017   doi: 10.1111/bioe.12370   open full text
  • Balancing bioethics by sensing the aesthetic.
    Paul Macneill.
    Bioethics. September 13, 2017
    This article is critical of “bioethics” as it is widely understood and taught, noting in particular an emphasis given to philosophical justification, reason and rationality. It is proposed that “balancing” bioethics be achieved by giving greater weight to practice and the aesthetic: defined in terms of sensory perception, emotion and feeling. Each of those three elements is elaborated as a non‐cognitive capacity and, when taken together, comprise aesthetic sensitivity and responsiveness. This is to recognise the aesthetic as a productive element in bioethics as practice. Contributions from the philosophy of art and aesthetics are drawn into the discussion to bring depth to an understanding of “the aesthetic”. This approach is buttressed by philosophers – including Foucault and 18th century German philosophers (in particular Kant) – who recognized a link between ethics and aesthetics. The article aims to give substance to a claim that bioethics necessarily comprises a cognitive component, relating to reason, and a non‐cognitive component that draws on aesthetic sensibility and relates to practice. A number of advantages of bioethics, understood to explicitly acknowledge the aesthetic, are proffered. Having defined bioethics in conventional terms, there is discussion of the extent to which other approaches to bioethics (including casuistry, virtue ethics, and narrative ethics) recognize aesthetic sensitivity in their practice. It is apparent that they do so to varying extents although not always explicitly. By examining this aspect of applied ethics, the paper aims to draw attention to aesthetic sensitivity and responsiveness as integral to ethical and effective health care.
    September 13, 2017   doi: 10.1111/bioe.12390   open full text
  • Merging arts and bioethics: An interdisciplinary experiment in cultural and scientific mediation.
    Vincent Couture, Jean‐Christophe Bélisle‐Pipon, Marianne Cloutier, Catherine Barnabé.
    Bioethics. September 13, 2017
    How to engage the public in a reflection on the most pressing ethical issues of our time? What if part of the solution lies in adopting an interdisciplinary and collaborative strategy to shed light on critical issues in bioethics? An example is Art + Bioéthique, an innovative project that brought together bioethicists, art historians and artists with the aim of expressing bioethics through arts in order to convey the “sensitive” aspect of many health ethics issues. The aim of this project was threefold: 1) to identify and characterize mechanisms for the meeting of arts and bioethics; 2) to experiment with and co‐construct a dialogue between arts and bioethics; and 3) to initiate a public discussion on bioethical issues through the blending of arts and bioethics. In connection with an exhibition held in March 2016 at the Espace Projet, a non‐profit art space in Montréal (Canada), the project developed a platform that combined artworks, essays and cultural & scientific mediation activities related to the work of six duos of young bioethics researchers and emerging artists. Each duo worked on a variety of issues, such as the social inclusion of disabled people, the challenges of practical applications of nanomedicine and regenerative medicine, and a holistic approach to contemporary diseases. This project, which succeeded in stimulating an interdisciplinary dialogue and collaboration between bioethics and arts, is an example of an innovative approach to knowledge transfer that can move bioethics reflection into the public space.
    September 13, 2017   doi: 10.1111/bioe.12391   open full text
  • The limits of the treatment‐enhancement distinction as a guide to public policy.
    Alexandre Erler.
    Bioethics. September 13, 2017
    Many believe that the treatment‐enhancement distinction (TED) marks an important ethical boundary that we should use to shape public policy on biomedical interventions. A common justification for this purported normative force appeals to the idea that, whereas treatments respond to genuine medical needs, (most) enhancements can only satisfy mere preferences or “expensive tastes”. This article offers a critique of that justification, while still accepting the TED as a conceptual tool, as well as some of the key ethical axioms endorsed by its proponents. I begin by laying out the TED, the practical implications that tend to be drawn from it, and the justification just sketched for these implications. Using examples drawn from preventive medicine, biomedical technology, and other categories of biomedical interventions, I then go on to challenge both the presupposition of a fundamental dichotomy between treatments and enhancements, and the assumption that enhancements – barring rare exceptions – cannot serve legitimate medical needs. Finally, I consider some ways in which supporters of the TED might try re‐formulating the distinction to blunt the force of my critique. I conclude that such a move cannot fully succeed, and that while the TED does have some degree of normative force, it nevertheless cannot play the role that its advocates expect from it. Seeking to justify a general presumption against enhancements based on the rationale I critique here would mean ignoring their various potential benefits, including medical or therapeutic, and would reflect a prejudice – which I refer to as “treatment fetishism”.
    September 13, 2017   doi: 10.1111/bioe.12377   open full text
  • Family interests and medical decisions for children.
    Paul Baines.
    Bioethics. September 13, 2017
    Medical decisions for children are usually justified by the claim that they are in a child's best interests. More recently, following criticisms of the best interests standard, some advocate that the family's interests should influence medical decisions for children, although what is meant by family interests is often not made clear. I argue that at least two senses of family interests may be discerned. There is a ‘weak’ sense (as the amalgamated interests of family members) of family interests and a ‘strong’ sense (that the family itself has interests over and above the interests of individuals). I contend that there are problems with both approaches in making medical decisions for children but that the weak sense is more plausible. Despite this, I argue that claims for family interests are not helpful in making medical decisions for children.
    September 13, 2017   doi: 10.1111/bioe.12376   open full text
  • Ethical issues raised by thyroid cancer overdiagnosis: A matter for public health?
    Wendy A. Rogers, Wendy L. Craig, Vikki A. Entwistle.
    Bioethics. September 13, 2017
    Current practices of identifying and treating small indolent thyroid cancers constitute an important but in some ways unusual form of overdiagnosis. Overdiagnosis refers to diagnoses that generally harm rather than benefit patients, primarily because the diagnosed condition is not a harmful form of disease. Patients who are overdiagnosed with thyroid cancer are harmed by the psycho‐social impact of a cancer diagnosis, as well as treatment interventions such partial or total thyroidectomy, lifelong thyroid replacement hormone, monitoring, surgical complications and other side effects. These harms seem to outweigh any putative benefit of knowing about a cancer that would not have caused problems if left undiscovered. In addition to harms to patients, thyroid cancer overdiagnosis leads to significant opportunity costs at a societal level, due to costs of diagnosis and treatment. Unlike many other overdiagnosed cancers, accurate risk stratification is possible with thyroid cancer. At the individual patient level, use of this risk information might support informed choice and/or shared decision‐making, as mandated by clinical ethics frameworks. And this approach might, to some extent, help to reduce rates of diagnosis and intervention. In practice, however, it is unlikely to stem the rising incidence and associated harms and costs of overdiagnosed thyroid cancer, especially in situations where health professionals have conflicts of interest. We argue in this article that thyroid cancer overdiagnosis may be usefully understood as a public health problem, and that some public health approaches will be readily justifiable and are more likely to be effective in minimising its harms.
    September 13, 2017   doi: 10.1111/bioe.12383   open full text
  • Fertility, immigration, and the fight against climate change.
    Jake Earl, Colin Hickey, Travis N. Rieder.
    Bioethics. September 13, 2017
    Several philosophers have recently argued that policies aimed at reducing human fertility are a practical and morally justifiable way to mitigate the risk of dangerous climate change. There is a powerful objection to such “population engineering” proposals: even if drastic fertility reductions are needed to prevent dangerous climate change, implementing those reductions would wreak havoc on the global economy, which would seriously undermine international antipoverty efforts. In this article, we articulate this economic objection to population engineering and show how it fails. We argue, first, that the economic objection paints an inaccurate picture of the complicated relationship between demographic change and economic growth, and second, that any untoward economic effects of fertility reduction can be mitigated with additional policies. Specifically, we argue that supplementing fertility reduction with policies that facilitate the emigration of younger people from developing nations to developed nations could allow for both global reductions in GHG emissions and continued economic stability. Further, we show that moral arguments against such unprecedented increases in immigration are unsuccessful. We conclude that population engineering is a practical and morally justifiable tool for addressing the twin evils of climate change and global poverty.
    September 13, 2017   doi: 10.1111/bioe.12374   open full text
  • Public health agencies’ obligations and the case of Zika.
    Florencia Luna.
    Bioethics. September 13, 2017
    This article focuses on the initial reactions to the Zika epidemic by national and international public health agencies. It presents and analyzes some responses public officials made about sexual and reproductive health at the inception of the epidemic. It also describes the different challenges and obligations faced by local and international public health agencies, as these have not been clearly outlined. The article argues that these agencies have different obligations and should fulfill them despite existing obstacles. While international agencies should honor their leadership role and make recommendations at a meta‐level, local agencies should provide, in the case of Zika, a framework for empowerment and grant women the freedom to achieve sexual and reproductive health so that they can avoid the consequences of this epidemic.
    September 13, 2017   doi: 10.1111/bioe.12388   open full text
  • IAB Presidential address: “Searching for Justice”.
    Angela Ballantyne.
    Bioethics. September 13, 2017
    There is no abstract available for this paper.
    September 13, 2017   doi: 10.1111/bioe.12393   open full text
  • Does benefit justify research with children?
    Ariella Binik.
    Bioethics. September 08, 2017
    The inclusion of children in research gives rise to a difficult ethical question: What justifies children's research participation and exposure to research risks when they cannot provide informed consent? This question arises out of the tension between the moral requirement to obtain a subject's informed consent for research participation, on the one hand, and the limited capacity of most children to provide informed consent, on the other. Most agree that children's participation in clinical research can be justified. But the ethical justification for exposing children to research risks in the absence of consent remains unclear. One prevalent group of arguments aims to justify children's risk exposure by appealing to the concept of benefit. I call these ‘benefit arguments’. Prominent versions of this argument defend the idea that broadening our understanding of the notion of benefit to include non‐medical benefits (such as the benefit of a moral education) helps to justify children's research participation. I argue that existing benefit arguments are not persuasive and raise problems with the strategy of appealing to broader notions of benefit to justify children's exposure to research risk.
    September 08, 2017   doi: 10.1111/bioe.12385   open full text
  • A Kantian ethics approach to moral bioenhancement.
    Sarah Carter.
    Bioethics. September 05, 2017
    It seems, at first glance, that a Kantian ethics approach to moral enhancement would tend towards the position that there could be no place for emotional modulation in any understanding of the endeavour, owing to the typically understood view that Kantian ethics does not allow any role for emotion in morality as a whole. It seems then that any account of moral bioenhancement which places emotion at its centre would therefore be rejected. This article argues, however, that this assumption is incorrect. Given later writings by Kant on the role of sympathy, and taking into account other concerns in Kantian ethics (such as bodily integrity), it may in fact be the case that Kantian ethics would allow for an account of moral bioenhancement through emotional modulation, and that in some (rare) cases such an intervention might even be considered to be a duty.
    September 05, 2017   doi: 10.1111/bioe.12380   open full text
  • Medical Innovation in a Children's Hospital: ‘Diseases desperate grown by desperate appliance are relieved, or not at all’.
    Vic Larcher, Helen Turnham, Joe Brierley.
    Bioethics. September 05, 2017
    A balance needs to be struck between facilitating compassionate access to innovative treatments for those in desperate need, and the duty to protect such vulnerable individuals from the harms of untested/unlicensed treatments. We introduced a principle‐based framework (2009) to evaluate such requests and describe its application in the context of recently evolved UK, US and European regulatory processes. 24 referrals (20 individual; four group) were received by our quaternary children's hospital Clinical Ethics Committee (CEC) over the 5‐year period (2011‐16). The CEC‐rapid response group evaluated individual cases within 48‐hours; the main referrers being haematology/oncology, immunology or transplant services (14). Most requests were for drug/vaccine/pre‐trial access (13) or biological/cellular therapies (8). The majority of individual requests were approved (19/20); neutral or negative opinions were given in 5, including 3 group requests. Recently evolved regulatory processes share common criteria and conditions to our framework including: demonstration of clinical need; sound scientific basis with lack of viable alternative; risks‐benefit/best interests evaluation; arrangements for fully informed consent; no compromise of arrangements to test treatment for licensing purposes; consideration of resource implications. There are differences between individual processes and with our framework, with respect to procedures, scope, application format, costs and obligation to make available all outcome data. Our experience has emphasized the need for an independent, principled, consistent, fair and transparent response to the increasing demand for innovative treatment on a compassionate basis. We believe that there is a need for harmonization of the recent proliferation of regulation and legislation in this area.
    September 05, 2017   doi: 10.1111/bioe.12381   open full text
  • Bioethics, children, and the environment.
    Timothy F. Murphy.
    Bioethics. September 05, 2017
    Queer perspectives have typically emerged from sexual minorities as a way of repudiating flawed views of sexuality, mischaracterized relationships, and objectionable social treatment of people with atypical sexuality or gender expression. In this vein, one commentator offers a queer critique of the conceptualization of children in regard to their value for people's identities and relationships. According to this account, children are morally problematic given the values that make them desirable, their displacement of other beings and things entitled to moral protection, not to mention the damaging environmental effects that follow in the wake of population growth. Objectionable views of children are said even to have colonized the view of lesbian, gay, bisexual, and trans (LGBT) people who – with the enthusiastic endorsement of bioethics – increasingly turn to assisted reproductive treatments to have children. In the face of these outcomes, it is better – according to this account – that people reconsider their interest in children. This account is not, however, ultimately strong enough to override people's interest in having children, relative to the benefits they confer and relative to the benefits conferred on children themselves. It is certainly not strong enough to justify differential treatment of LGBT people in matters of assisted reproductive treatments. Environmental threats in the wake of population growth might be managed in ways other than devaluing children as such. Moreover, this account ultimately damages the interests of LGBT people in matters of access, equity, and children, which outcome is paradoxical, given the origins of queer perspectives as efforts to assert and defend the social interests of sexual and gender minorities.
    September 05, 2017   doi: 10.1111/bioe.12386   open full text
  • The indispensability of labelled groups to vulnerability in bioethics.
    Adrian Kwek.
    Bioethics. August 30, 2017
    Regarding the determination of vulnerability, the bioethics community has univocally jettisoned “labelled groups”, groups whose membership confers a context‐invariant “vulnerable” status to their members. While the usual reasons against the sole use of labelled groups to determine the vulnerability of individuals are sound, labelled groups as exemplars of vulnerability can play indispensable roles in bioethical reasoning. In this article, I argue against the wholesale jettisoning of labelled groups by showing how they can be useful.
    August 30, 2017   doi: 10.1111/bioe.12379   open full text
  • Reconsidering paternalism in clinical research.
    Lynn A. Jansen, Steven Wall.
    Bioethics. August 30, 2017
    The ethical standards that regulate clinical research have multiple rationales. Among them is the need to protect potential subjects from making imprudent decisions, which extends beyond the soft paternalistic concern to protect people from making uninformed decisions to participate in trials. This article argues that a plausible risk/benefit restriction on clinical trials is presumptively justified by hard paternalism, which in turn is supported by a deeper fairness‐based rationale. This presumptive case for hard paternalism in research is not defeated by the alleged right to participate in clinical trials, by concerns about insult or status, by the need to conduct early phase trials that promise little to no benefit to participants, or by the recognition that some potential subjects are altruistically motivated.
    August 30, 2017   doi: 10.1111/bioe.12382   open full text
  • Presuming patient autonomy in the face of therapeutic misconception.
    Pat McConville.
    Bioethics. August 30, 2017
    Therapeutic misconception involves the failure of subjects either to understand or to incorporate into their own expectations the distinctions in nature and purpose of personally responsive therapeutic care, and the generic relationship between subject and investigator which is constrained by research protocols. Researchers cannot disregard this phenomenon if they are to ensure that subjects engage in research on the basis of genuine informed consent. However, our presumption of patient autonomy must be sustained unless we have compelling evidence of serious misunderstanding. This article argues that the mere expression of aspects of therapeutic misconception should not necessarily displace the presumption of subject autonomy or undermine ethical inclusion in research for at least three reasons. First, some interpretations of the empirical data do not suggest misunderstanding. Second, assessment of misestimation and optimism are delicate and value‐laden, and turn quickly from questions of autonomy to questions of judgment. Third, incomplete understanding may yet be sufficient to allow a subject to engage in a substantially autonomous decision‐making process. Our point is not to dismiss the possibility of genuine therapeutic misconception, but to question its frequency and fatality to the consent process.
    August 30, 2017   doi: 10.1111/bioe.12384   open full text
  • When doctors deny drugs: Sexism and contraception access in the medical field.
    J. B. Delston.
    Bioethics. August 29, 2017
    Politicians, employers, courts, and health insurance companies are often discussed as problematically preventing access to birth control. However, doctors have more direct control over women's health and quietly have been much more effective at preventing patients' access to contraception. Obstetrician/Gynecologists routinely deny their patients access to contraception ostensibly in the name of health by withholding birth control until patients undergo yearly pap smears. I argue that those in the medical field are motivated by similarly sexist concerns as those in other major institutions in the United States, but that they are often overlooked in discussions of biomedical ethics. After providing background, I argue that using birth control as a bargaining chip to control patients is morally impermissible, is paternalistic, and is contrary to consent. I next argue that sexism explains, though does not justify, this practice. I discuss the medical harms of routine pap smears and withholding birth control. These claims make medical malpractice likely. Withholding birth control to coerce individuals seeking medical care is medical malpractice, paternalistic, violates autonomy, and is contrary to consent.
    August 29, 2017   doi: 10.1111/bioe.12373   open full text
  • Two kinds of physician‐assisted death.
    Govert den Hartogh.
    Bioethics. August 23, 2017
    I argue that the concept ‘physician‐assisted suicide’ covers two procedures that should be distinguished: giving someone access to humane means to end his own life, and taking co‐responsibility for the safe and effective execution of that plan. In the first section I explain the distinction, in the following sections I show why it is important. To begin with I argue that we should expect the laws that permit these two kinds of ‘assistance’ to be different in their justificatory structure. Laws that permit giving access only presuppose that the right to self‐determination implies a right to suicide, but laws that permit doctors to take co‐responsibility may have to appeal to a principle of mercy or beneficence. Actually this difference in justificatory structure can to some extent be found in existing regulatory systems, though far from consistently. Finally I argue that if one recognizes a right to suicide, as Oregon and other American states implicitly do, and as the European Court of Human Rights has recently done explicitly, one is committed to permit the first kind of ‘assistance’ under some conditions.
    August 23, 2017   doi: 10.1111/bioe.12371   open full text
  • Shame and HIV: Strategies for addressing the negative impact shame has on public health and diagnosis and treatment of HIV.
    Phil Hutchinson, Rageshri Dhairyawan.
    Bioethics. August 23, 2017
    There are five ways in which shame might negatively impact upon our attempts to combat and treat HIV. Shame can prevent an individual from disclosing all the relevant facts about their sexual history to the clinician. Shame can be a motivational factor in people living with HIV not engaging with or being retained in care. Shame can prevent individuals from presenting at clinics for STI and HIV testing. Shame can prevent an individual from disclosing their HIV (or STI) status to new sexual partners. Shame can serve to psychologically imprison people, it makes the task of living with HIV a far more negative experience than it should, or needs to, be. Drawing on recent philosophical work on shame, and more broadly on work in the philosophy and psychology of emotion, we (a.) propose a framework for understanding how shame operates upon those who experience the emotion, (b.) propose a strategy for combatting the negative role shame plays in the fight against HIV, and (c) suggest further study so as to identify the tactics that might be employed in pursuing the strategy here proposed.
    August 23, 2017   doi: 10.1111/bioe.12378   open full text
  • ‘You are inferior!’ Revisiting the expressivist argument.
    Bjørn Hofmann.
    Bioethics. June 14, 2017
    According to the expressivist argument the choice to use biotechnologies to prevent the birth of individuals with specific disabilities is an expression of disvalue for existing people with this disability. The argument has stirred a lively debate and has recently received renewed attention. This article starts with presenting the expressivist argument and its core elements. It then goes on to present and examine the counter‐arguments before it addresses some aspects that have gained surprisingly little attention. The analysis demonstrates that the expressivist argument has a wide range of underpinnings and that counter‐arguments tend to focus on only a few of these. It also reveals an important aspect that appears to have been ignored, i.e., that people do not select foetuses based on chromosomes or other biological traits, but based on characteristics of living persons with specific disabilities. This makes it more difficult to undermine the claim that negative selection of foetuses expresses a disvaluing of persons with such disabilities. It leaves the expressivist argument with a strong bite still.
    June 14, 2017   doi: 10.1111/bioe.12365   open full text
  • Tying oneself to the mast: One necessary cost to morally enhancing oneself biomedically.
    Benedict Rumbold.
    Bioethics. June 14, 2017
    In this article I seek to establish what, if anything, might be morally troubling about morally enhancing oneself through biomedical means. Building on arguments by Harris, while simultaneously acknowledging several valid counter‐arguments that have been put forth by his critics, I argue that taking BMEs necessarily incurs at least one moral cost in the restrictions they impose on our freedom. This does not necessarily entail that the use of BMEs cannot be overall justified, nor that, in certain cases, their costs may not be forestalled. It does show, however, that their use is not morally neutral. There is a cost to such technologies and, as such, the onus will always be on their defenders to show that these costs can compensated for.
    June 14, 2017   doi: 10.1111/bioe.12362   open full text
  • The experiences of pregnant women in an interventional clinical trial: Research In Pregnancy Ethics (RIPE) study.
    Angela Ballantyne, Susan Pullon, Lindsay Macdonald, Christine Barthow, Kristen Wickens, Julian Crane.
    Bioethics. June 13, 2017
    There is increasing global pressure to ensure that pregnant women are responsibly and safely included in clinical research in order to improve the evidence base that underpins healthcare delivery during pregnancy. One supposed barrier to inclusion is the assumption that pregnant women will be reluctant to participate in research. There is however very little empirical research investigating the views of pregnant women. Their perspective on the benefits, burdens and risks of research is a crucial component to ensuring effective recruitment. The Research In Pregnancy Ethics (RIPE) study set out to ascertain the views of pregnant women about research participation using an inductive thematic analysis. We conducted semi‐structured interviews with 20 women who had participated in a double‐blind randomised placebo controlled trial in Wellington (New Zealand) while pregnant. Our results show that at least some pregnant women recognise the value and importance of research during pregnancy. The women we interviewed were deeply invested in the research process and outcomes. Key motivations for participating were altruism, playing a valuable civic role and the importance of research. The main perceived burdens related to inconvenience and time commitment. For some women, possible randomization to the placebo arm was regarded as a burden or disadvantage.
    June 13, 2017   doi: 10.1111/bioe.12361   open full text
  • The Ethics of Clinical Trials Research in Severe Mood Disorders.
    Allison C. Nugent, Franklin G. Miller, Ioline D. Henter, Carlos A. Zarate.
    Bioethics. May 15, 2017
    Mood disorders, including major depressive disorder (MDD) and bipolar disorder (BD), are highly prevalent, frequently disabling, and sometimes deadly. Additional research and more effective medications are desperately needed, but clinical trials research in mood disorders is fraught with ethical issues. Although many authors have discussed these issues, most do so from a theoretical viewpoint. This manuscript uses available empirical data to inform a discussion of the primary ethical issues raised in mood disorders research. These include issues of consent and decision‐making capacity, including patients’ motivations for participating in research. We also address drug withdrawals, placebo controls, and the overall safety of research. Finally, we examine the extant literature for studies discussing potential indirect benefits of clinical trials research to participants. Taken together, the evidence suggests that clinical trials research incorporating drug withdrawals and placebo controls can be conducted safely and ethically, even in patients with severe or treatment‐resistant mood disorders. In fact, given the dearth of effective treatment options for this population, it is our opinion that a moral imperative exists to extend the offer of research participation to severely ill or treatment‐resistant groups.
    May 15, 2017   doi: 10.1111/bioe.12349   open full text
  • Assisted Dying & Disability.
    Christopher A. Riddle.
    Bioethics. April 17, 2017
    This article explores at least two dominant critiques of assisted dying from a disability rights perspective. In spite of these critiques, I conclude that assisted dying ought to be permissible. I arrive at the conclusion that if we respect and value people with disabilities, we ought to permit assisted dying. I do so in the following manner. First, I examine recent changes in legislation that have occurred since the Royal Society of Canada Expert Panel on End‐of‐Life Decision‐Making report, published in this journal. I suggest that these changes are likely to only strengthen opposition to assisted dying from disability rights activists and people with disabilities. Second, I focus on respect for people with disabilities and in particular, respect for their autonomy and decision‐making abilities. Third, I explore the opposition to assisted dying that focuses on risk and the vulnerability of people with disabilities. Here I suggest that this risk ought not to be of special concern. Ultimately, I conclude that upholding respect for the disabled requires the legalization of assisted dying, rather than the denial of access in a misguided effort to protect people with disabilities.
    April 17, 2017   doi: 10.1111/bioe.12353   open full text
  • Ethical Considerations of Triage Following Natural Disasters: The IDF Experience in Haiti as a Case Study.
    Efrat Ram‐Tiktin.
    Bioethics. April 03, 2017
    Natural disasters in populated areas may result in massive casualties and extensive destruction of infrastructure. Humanitarian aid delegations may have to cope with the complicated issue of patient prioritization under conditions of severe resource scarcity. A triage model, consisting of five principles, is proposed for the prioritization of patients, and it is argued that rational and reasonable agents would agree upon them. The Israel Defense Force's humanitarian mission to Haiti following the 2010 earthquake serves as a case study for the various considerations taken into account when designing the ethical‐clinical policy of field hospitals. The discussion focuses on three applications: the decision to include an intensive care unit, the decision to include obstetrics and neonatal units, and the treatment policy for compound fractures.
    April 03, 2017   doi: 10.1111/bioe.12352   open full text
  • Wrongness, Responsibility, and Conscientious Refusals in Health Care.
    Alida Liberman.
    Bioethics. April 03, 2017
    In this article, I address what kinds of claims are of the right kind to ground conscientious refusals. Specifically, I investigate what conceptions of moral responsibility and moral wrongness can be permissibly presumed by conscientious objectors. I argue that we must permit HCPs to come to their own subjective conclusions about what they take to be morally wrong and what they take themselves to be morally responsible for. However, these subjective assessments of wrongness and responsibility must be constrained in several important ways: they cannot involve empirical falsehoods, objectionably discriminatory attitudes, or unreasonable normative beliefs. I argue that the sources of these constraints are the basic epistemic, relational, and normative competencies needed to function as a minimally decent health‐care professional. Finally, I consider practical implications for my framework, and argue that it shows us that the objection raised by the plaintiffs in Zubik v. Burwell is of the wrong sort.
    April 03, 2017   doi: 10.1111/bioe.12351   open full text
  • Fair Resource Allocation to Health Research: Priority Topics for Bioethics Scholarship.
    Bridget Pratt, Adnan A. Hyder.
    Bioethics. April 03, 2017
    This article draws attention to the limited amount of scholarship on what constitutes fairness and equity in resource allocation to health research by individual funders. It identifies three key decisions of ethical significance about resource allocation that research funders make regularly and calls for prioritizing scholarship on those topics – namely, how health resources should be fairly apportioned amongst public health and health care delivery versus health research, how health research resources should be fairly allocated between health problems experienced domestically versus other health problems typically experienced by disadvantaged populations outside the funder's country, and how domestic and non‐domestic health research funding should be further apportioned to different areas, e.g. types of research and recipients. These three topics should be priorities for bioethics research because their outcomes have a substantial bearing on the achievement of health justice. The proposed agenda aims to move discussion on the ethics of health research funding beyond its current focus on the mismatch between worldwide basic and clinical research investment and the global burden of disease. Individual funders’ decision‐making on whether and to what extent to allocate resources to non‐domestic health research, health systems research, research on the social determinants of health, capacity development, and recipients in certain countries should also be the focus of ethical scrutiny.
    April 03, 2017   doi: 10.1111/bioe.12350   open full text
  • Moral Hard‐Wiring and Moral Enhancement.
    Ingmar Persson, Julian Savulescu.
    Bioethics. March 16, 2017
    We have argued for an urgent need for moral bioenhancement; that human moral psychology is limited in its ability to address current existential threats due to the evolutionary function of morality to maximize cooperation in small groups. We address here Powell and Buchanan's novel objection that there is an ‘inclusivist anomaly’: humans have the capacity to care beyond in‐groups. They propose that ‘exclusivist’ (group‐based) morality is sensitive to environmental cues that historically indicated out‐group threat. When this is not present, we are inclusivist. They conclude that moral bioenhancement is unnecessary or less effective than socio‐cultural interventions. We argue that Powell and Buchanan underestimate the hard‐wiring features of moral psychology; their appeal to adaptively plastic, conditionally expressed responses accounts for only a fragment of our moral psychology. In addition to restrictions on our altruistic concern that their account addresses – such as racism and sexism – there are ones it is ill‐suited to address: that our concern is stronger for kin and friends and for concrete individuals rather than for statistical lives; also our bias towards the near future. Hard‐wired features of our moral psychology that are not clearly restrictions in altruistic concern also include reciprocity, tit‐for‐tat, and others. Biomedical means are not the only, and maybe not the most important, means of moral enhancement. Socio‐cultural means are of great importance and there are currently no biomedical interventions for many hard‐wired features. Nevertheless research is desirable because the influence of these features is greater than our critics think.
    March 16, 2017   doi: 10.1111/bioe.12314   open full text
  • Is Consent Based on Trust Morally Inferior to Consent Based on Information?
    Nana Cecilie Halmsted Kongsholm, Klemens Kappel.
    Bioethics. February 27, 2017
    Informed consent is considered by many to be a moral imperative in medical research. However, it is increasingly acknowledged that in many actual instances of consent to participation in medical research, participants do not employ the provided information in their decision to consent, but rather consent based on the trust they hold in the researcher or research enterprise. In this article we explore whether trust‐based consent is morally inferior to information‐based consent. We analyse the moral values essential to valid consent – autonomy, voluntariness, non‐manipulation, and non‐exploitation – and assess whether these values are less protected and promoted by consent based on trust than they are by consent based on information. We find that this is not the case, and thus conclude that trust‐based consent if not morally inferior to information‐based consent.
    February 27, 2017   doi: 10.1111/bioe.12342   open full text
  • Ways Out of the Patenting Prohibition? Human Parthenogenetic and Induced Pluripotent Stem Cells.
    Hannah Schickl, Matthias Braun, Peter Dabrock.
    Bioethics. February 09, 2017
    According to the judgement of the European Court of Justice in 2014, human parthenogenetic stem cells are excluded from the patenting prohibition of procedures based on hESC by the European Biopatent Directive, because human parthenotes are not human embryos. This article is based on the thesis that in light of the technological advances in the field of stem cell research, the attribution of the term ‘human embryo’ to certain entities on a descriptive level as well as the attribution of a normative protection status to certain entities based on the criterion of totipotency, are becoming increasingly unclear. The example of human parthenotes in particular demonstrates that totipotency is not at all a necessary condition for the attribution of the term ‘human embryo’. Furthermore, the example of hiPSC and somatic cells particularly shows that totipotency is also not a sufficient condition for the attribution of a normative protection status to certain entities. Therefore, it is not a suitable criterion for distinguishing between human embryos worthy of protection and human non‐embryos not worthy of protection. Consequently, this conclusion has repercussions for the patenting question. The strict delineation between an ethically problematic commercial use of human embryos and the concomitant patenting prohibition of hESC‐based procedures and an ethically unproblematic commercial use of human non‐embryos and the therefore either unrestrictedly permitted (cf. human parthenotes) or even unregulated (cf. hiPSC) patenting of procedures based on these alleged alternatives becomes increasingly blurred.
    February 09, 2017   doi: 10.1111/bioe.12334   open full text
  • Is There a Right to the Death of the Foetus?
    Eric Mathison, Jeremy Davis.
    Bioethics. February 09, 2017
    At some point in the future – perhaps within the next few decades – it will be possible for foetuses to develop completely outside the womb. Ectogenesis, as this technology is called, raises substantial issues for the abortion debate. One such issue is that it will become possible for a woman to have an abortion, in the sense of having the foetus removed from her body, but for the foetus to be kept alive. We argue that while there is a right to an abortion, there are reasons to doubt that there is a right to the death of the foetus. Our strategy in this essay is to consider and reject three arguments in favour of this latter right. The first claims that women have a right not to be biological mothers, the second that women have a right to genetic privacy, and the third that a foetus is one's property. Furthermore, we argue that it follows from rejecting the third claim that genetic parents also lack a right to the destruction of cryopreserved embryos used for in vitro fertilization. The conclusion that a woman possesses no right to the death of the foetus builds upon the claims that other pro‐choice advocates, such as Judith Jarvis Thomson, have made.
    February 09, 2017   doi: 10.1111/bioe.12331   open full text
  • The Place of Crowdfunding in the Discovery of Scientific and Social Value of Medical Research.
    Lorenzo del Savio.
    Bioethics. February 09, 2017
    Crowdfunding is increasingly common in medical research. Some critics are concerned that by adopting crowdfunding, some researchers may sidestep the established systems of review of the social and scientific value of studies (e.g. impact on disease burden, issues of justice), especially mechanisms of expert‐based review. I argue firstly that such concerns are based on a misleading picture of how research value is assessed and secondly that crowdfunding may turn out to be an useful complement of extant funding systems. I start with the idea that medical knowledge is a structured and intermediate public good and explain from this perspective that funding systems as a whole, rather than any of their parts (such as expert‐based reviews) ought to be considered devices for the discovery of the social and scientific value of research. If so, we should not be concerned with whether crowdfunding bypasses expert reviews, but with whether it may constitute an improvement of extant funding systems. In the second part, I speculate that crowdfunding may ameliorate, albeit limitedly, some recalcitrant failures of funding systems, such as the sponsorship of research on neglected diseases, and smooth funding adaptations for scientific transitions. If, after trial, such hypotheses turn out to be true, crowdfunding ought to be promoted.
    February 09, 2017   doi: 10.1111/bioe.12339   open full text
  • Human Dignity and Human Enhancement: A Multidimensional Approach.
    David G. Kirchhoffer.
    Bioethics. February 09, 2017
    In the debates concerning the ethics of human enhancement through biological or technological modifications, there have been several appeals to the concept of human dignity, both by those favouring such enhancement and by those opposing it. The result is the phenomenon of ‘dignity talk', where opposing sides both appeal to the concept of human dignity to ground their arguments resulting in a moral impasse. This article examines the use of the concept of human dignity in the enhancement debates and reveals that the problem of dignity talk arises because proponents of various positions tend to ground human dignity in different features of the human individual. These features include species‐membership, possession of a particular capacity, a sense of self‐worth, and moral behaviour. The article proposes a solution to this problem by appealing to another feature of human beings, namely their being‐in‐relationship‐over‐time. Doing so enables us to understand dignity as a concept that affirms the worth of human individuals as complex, multidimensional wholes, rather than as isolated features. Consequently, the concept of human dignity can serve both a descriptive and a normative function in the enhancement debates. At a descriptive level, asking what advocates of a position mean when they refer to human dignity will reveal what aspects of being human they deem to be most valuable. The debate can then focus on these values. The normative function, although it cannot proscribe or prescribe all enhancement, approves only those enhancements that contribute to the flourishing of human individuals as multidimensional wholes.
    February 09, 2017   doi: 10.1111/bioe.12343   open full text
  • In Defense of Artificial Replacement.
    Derek Shiller.
    Bioethics. February 03, 2017
    If it is within our power to provide a significantly better world for future generations at a comparatively small cost to ourselves, we have a strong moral reason to do so. One way of providing a significantly better world may involve replacing our species with something better. It is plausible that in the not‐too‐distant future, we will be able to create artificially intelligent creatures with whatever physical and psychological traits we choose. Granted this assumption, it is argued that we should engineer our extinction so that our planet's resources can be devoted to making artificial creatures with better lives.
    February 03, 2017   doi: 10.1111/bioe.12340   open full text
  • Epistemic Authority and Genuine Ethical Controversies.
    Adam James Roberts.
    Bioethics. February 03, 2017
    In ‘Professional Hubris and its Consequences’, Eric Vogelstein claims that ‘that there are no good arguments in favor of professional organizations taking genuinely controversial positions on issues of professional ethics’. In this response, I defend two arguments in favour of organisations taking such positions: that their stance‐taking may lead to better public policy, and that it may lead to better practice by medical professionals. If either of those defences succeeds, then Vogelstein's easy path to his conclusion – that professional organisations should not take such stances – is blocked. He or others must instead look to establish that the reasons against stance‐taking on genuine ethical controversies are more compelling than those for it: plausibly a more challenging task.
    February 03, 2017   doi: 10.1111/bioe.12341   open full text
  • Participatory Bioethics Research and its Social Impact: The Case of Coercion Reduction in Psychiatry.
    Tineke A. Abma, Yolande Voskes, Guy Widdershoven.
    Bioethics. January 06, 2017
    In this article we address the social value of bioethics research and show how a participatory approach can achieve social impact for a wide audience of stakeholders, involving them in a process of joint moral learning. Participatory bioethics recognizes that research co‐produced with stakeholders is more likely to have impact on healthcare practice. These approaches aim to engage multiple stakeholders and interested partners throughout the whole research process, including the framing of ideas and research questions, so that outcomes are tailored to the interests and context, and the type of impact stakeholders envisage. There is an emphasis on realizing social change through the conduct (not merely the results) of the research, and it is believed that the engagement of stakeholders in the research process will promote their intrinsic motivation to change their practice. Another distinctive feature of participatory bioethics research is that its central normative commitment is to reflection and dialogue, not to a particular substantive ethical approach. In reflection and dialogue there is an emphasis on inclusion and the co‐production of knowledge. Furthermore, empirical and normative research are combined, and there is a deliberate attempt to give voice to otherwise marginalized positions. This provides a model of social impact which is relevant not only for bioethics research, but also for other areas of health care research. We will show the merits of a participatory approach to bioethics research with a case example. It concerns the reduction of coercion and in particular seclusion in Dutch mental healthcare.
    January 06, 2017   doi: 10.1111/bioe.12319   open full text
  • The Social Value of Pragmatic Trials.
    Shona Kalkman, Ghislaine van Thiel, Rieke van der Graaf, Mira Zuidgeest, Iris Goetz, Diederick Grobbee, Johannes van Delden.
    Bioethics. January 06, 2017
    Pragmatic trials aim to directly inform health care decision‐making through the collection of so‐called ‘real world data’ from observations of comparative treatment effects in clinical practice. In order to ensure the applicability and feasibility of a pragmatic trial, design features may be necessary that deviate from standard research ethics requirements. Examples are traditional requirements to seek written informed consent and to perform extensive data and safety monitoring. Proposals for deviations from standard research ethics practice have resulted in controversy about their ethical acceptability. One of the justifications for altered procedures is the allegedly high social value of pragmatic trials. In order to properly operationalize the concept in the ethical assessment of pragmatic trial designs, specification is warranted. We identified three determinants from common claims about a pragmatic trial's social value: (1) the extent to which the research question has real world relevance, (2) the trial design's ability to generate a real world answer and (3) the probability of direct uptake of the results by decision‐makers in practice. Subsequently, we discuss how these determinants should be applied to the practice of pragmatic trials, and to what extent they might be applicable to explanatory trials.
    January 06, 2017   doi: 10.1111/bioe.12315   open full text
  • Defining and Negotiating the Social Value of Research in Public Health Facilities: Perceptions of Stakeholders in a Research‐Active Province of South Africa.
    Elizabeth Lutge, Catherine Slack, Douglas Wassenaar.
    Bioethics. January 06, 2017
    This article reports on qualitative research conducted in KwaZulu‐Natal, South Africa, among researchers and gate‐keepers of health facilities in the province. Results suggest disparate but not irreconcilable perceptions of the social value of research in provincial health facilities. This study found that researchers tended to emphasize the contribution of research to the generation of knowledge and to the health of future patients while gate‐keepers of health facilities tended to emphasize its contribution to the healthcare system and to current patients. Furthermore, relations between research stakeholders were perceived to be somewhat fragile, making it difficult for stakeholders to achieve consensus about the social value of research, as well as on ways to maximize value. Interventions to negotiate a shared perspective on the social value of research would appear to be warranted, and the findings of this study suggest some focus areas for such intervention.
    January 06, 2017   doi: 10.1111/bioe.12323   open full text
  • Should Social Value Obligations be Local or Global?
    Rahul Nayak, Seema K. Shah.
    Bioethics. January 06, 2017
    According to prominent bioethics scholars and international guidelines, researchers and sponsors have obligations to ensure that the products of their research are reasonably available to research participants and their communities. In other words, the claim is that research is unethical unless it has local social value. In this article, we argue that the existing conception of reasonable availability should be replaced with a social value obligation that extends to the global poor (and not just research participants and host communities). To the extent the social value requirement has been understood as geographically constrained to the communities that host research and the countries that can afford the products of research, it has neglected to include the global poor as members of the relevant society. We argue that a new conception of social value obligations is needed for two reasons. First, duties of global beneficence give reason for researchers, sponsors, and institutions to take steps to make their products more widely accessible. Second, public commitments made by many institutions acknowledge and engender responsibilities to make the products of research more accessible to the global poor. Future research is needed to help researchers and sponsors discharge these obligations in ways that unlock their full potential.
    January 06, 2017   doi: 10.1111/bioe.12322   open full text
  • The Social Value of Health Research and the Worst Off.
    Nicola Barsdorf, Joseph Millum.
    Bioethics. January 06, 2017
    In this article we argue that the social value of health research should be conceptualized as a function of both the expected benefits of the research and the priority that the beneficiaries deserve. People deserve greater priority the worse off they are. This conception of social value can be applied for at least two important purposes: (1) in health research priority setting when research funders, policy‐makers, or researchers decide between alternative research projects; and (2) in evaluating the ethics of proposed research proposals when research ethics committees (RECs) assess whether the social value of the research is sufficient to justify the risks and burdens to research participants and others. In assessing how far a proposed research project will advance the interests of people who are more disadvantaged, research priority setters and RECs should examine (at least) the diseases that the research targets and the type of research. Just as certain diseases impose a greater burden on people who are more disadvantaged, so certain types of intervention and forms of research are more likely to benefit people who are more disadvantaged. We outline which populations are likely to be representative of the global worst off and identify what types of health research, and which disease categories, are priorities for these populations.
    January 06, 2017   doi: 10.1111/bioe.12320   open full text
  • The Social Value of Knowledge and the Responsiveness Requirement for International Research.
    Danielle M. Wenner.
    Bioethics. January 06, 2017
    Ethicists have long recognized that two necessary features of ethical research are scientific validity and social value. Yet despite a significant literature surrounding the validity component of this dictate, until recently there has been little attention paid to unpacking what the social value component might require. This article introduces a framework for assessing the social value of research, and in particular, for determining whether a given research program is likely to have significant social value of the kind necessary to fulfill the social value requirement. The article goes on to illustrate how this framework can provide a clearer account of the responsiveness requirement, an ethical dictum that is oft‐repeated but whose content and value as a guideline in international research remains contested. Although I introduce this conception of social value in the context of the responsiveness requirement, the account offered can, and is intended to, stand alone as a tool for the assessment of the social value of research. As such it can be usefully applied to discussions about the value of comparative effectiveness trials, the assessment of the continued proliferation of me‐too drugs and the research done to develop them, the demand for public access to study‐generated data, and persistent deficits in the publication of negative results.
    January 06, 2017   doi: 10.1111/bioe.12316   open full text
  • Reconfiguring Social Value in Health Research Through the Lens of Liminality.
    Agomoni Ganguli‐Mitra, Edward S. Dove, Graeme T. Laurie, Samuel Taylor‐Alexander.
    Bioethics. January 06, 2017
    Despite the growing importance of ‘social value’ as a central feature of research ethics, the term remains both conceptually vague and to a certain extent operationally rigid. And yet, perhaps because the rhetorical appeal of social value appears immediate and self‐evident, the concept has not been put to rigorous investigation in terms of its definition, strength, function, and scope. In this article, we discuss how the anthropological concept of liminality can illuminate social value and differentiate and reconfigure its variegated approaches. Employing liminality as a heuristic encourages a reassessment of how we understand the mobilization of ‘social value’ in bioethics. We argue that social value as seen through the lens of liminality can provide greater clarity of its function and scope for health research. Building on calls to understand social value as a dynamic, rather than a static, concept, we emphasize the need to appraise social value iteratively throughout the entire research as something that transforms over multiple times and across multiple spaces occupied by a range of actors.
    January 06, 2017   doi: 10.1111/bioe.12324   open full text
  • In Defense of a Social Value Requirement for Clinical Research.
    David Wendler, Annette Rid.
    Bioethics. January 06, 2017
    Many guidelines and commentators endorse the view that clinical research is ethically acceptable only when it has social value, in the sense of collecting data which might be used to improve health. A version of this social value requirement is included in the Declaration of Helsinki and the Nuremberg Code, and is codified in many national research regulations. At the same time, there have been no systematic analyses of why social value is an ethical requirement for clinical research. Recognizing this gap in the literature, recent articles by Alan Wertheimer and David Resnik argue that the extant justifications for the social value requirement are unpersuasive. Both authors conclude, contrary to almost all current guidelines and regulations, that it can be acceptable across a broad range of cases to conduct clinical research which is known prospectively to have no social value. The present article assesses this conclusion by critically evaluating the ethical and policy considerations relevant to the claim that clinical research must have social value. This analysis supports the standard view that social value is an ethical requirement for the vast majority of clinical research studies and should be mandated by applicable guidelines and policies.
    January 06, 2017   doi: 10.1111/bioe.12325   open full text
  • The Mitochondrial Replacement ‘Therapy’ Myth.
    Tina Rulli.
    Bioethics. December 30, 2016
    This article argues that two forms of mitochondrial replacement therapy, maternal spindle transfer (MST) and pro‐nuclear transfer (PNT), are not therapies at all because they do not treat children who are coming into existence. Rather, these technologies merely create healthy children where none was inevitable. Even if creating healthy lives has some value, it is not to be confused with the medical value of a cure or therapy. The article addresses a recent Bioethics article, ‘Mitochondrial Replacement: Ethics and Identity,’ by Wrigley, Wilkinson, and Appleby, who argue that PNT is morally favorable to MST due to the Non‐Identity Problem. Wrigley et al. claim that PNT, since it occurs post‐conception, preserves the identity of the resulting child, whereas MST, since it occurs pre‐conception, is an identity‐altering technique. As such, a child born with mitochondrial disease could complain that her parents failed to use PNT, but not MST. The present article argues that the authors are mistaken: both MST and PNT are identity‐affecting techniques. But this is of little matter, for we should be cautious in drawing any moral conclusions from the application of the Non‐Identity Problem to cases. The article then argues that the authors are mistaken in inferring that PNT is a type of embryonic cure or therapy for children with mitochondrial disease. The article cautions against the mistaken life‐saving rhetoric that is common in bioethics discussions of MRTs.
    December 30, 2016   doi: 10.1111/bioe.12332   open full text
  • Permanence can be Defended.
    Andrew McGee, Dale Gardiner.
    Bioethics. December 28, 2016
    In donation after the circulatory‐respiratory determination of death (DCDD), the dead donor rule requires that the donor be dead before organ procurement can proceed. Under the relevant limb of the Uniform Determination of Death Act 1981 (USA), a person is dead when the cessation of circulatory‐respiratory function is ‘irreversible’. Critics of current practice in DCDD have argued that the donor is not dead at the time organs are procured, and so the procurement of organs from these donors violates the dead donor rule. We offer a new argument here in defence of current DCDD practice, and, in particular, of the interpretation of the requirement of ‘irreversibility’ as permanence.
    December 28, 2016   doi: 10.1111/bioe.12317   open full text
  • The human genome as public: Justifications and implications.
    Michelle J. Bayefsky.
    Bioethics. December 28, 2016
    Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome – its common nature – has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature of the genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing. In order for public health officials to have the authority to develop genetics policies for the sake of the public good, the genome must have not only a common, but also a public, dimension. This article contends that DNA carries a public dimension through the use of two conceptual frameworks: the common heritage (CH) framework and the common resource (CR) framework. Both frameworks establish a public interest in the human genome, but the CH framework can be used to justify policies aimed at preserving and protecting the genome, while the CR framework can be employed to justify policies for utilizing the genome for the public benefit. A variety of possible policy implications are discussed, with special attention paid to the use of large‐scale genomics databases for public health research.
    December 28, 2016   doi: 10.1111/bioe.12329   open full text
  • The Consequences of Vagueness in Consent to Organ Donation.
    David M. Shaw.
    Bioethics. December 28, 2016
    In this article I argue that vagueness concerning consent to post‐mortem organ donation causes considerable harm in several ways. First, the information provided to most people registering as organ donors is very vague in terms of what is actually involved in donation. Second, the vagueness regarding consent to donation increases the distress of families of patients who are potential organ donors, both during and following the discussion about donation. Third, vagueness also increases the chances that the patient's intention to donate will not be fulfilled due to the family's distress. Fourth, the consequent reduction in the number of donated organs leads to avoidable deaths and increased suffering among potential recipients, and distresses them and their families. There are three strategies which could be used to reduce the harmful effects of this vagueness. First, recategorizing the reasons (commonly referred to as ‘overrules’ under the current system) given by families who refuse donation from registered donors would bring greater clarity to donation discussions. Second, people who wish to donate their organs should be encouraged to discuss their wishes in detail with their families, and to consider recording their wishes in other ways. Finally, the consent system for organ donation could be made more detailed, ensuring both that more information is provided to potential donors and that they have more flexibility in how their intentions are indicated; this last strategy, however, could have the disadvantage of discouraging some potential donors from registering.
    December 28, 2016   doi: 10.1111/bioe.12335   open full text
  • The Edge of Human? The Problem with the Posthuman as the ‘Beyond’.
    David R. Lawrence.
    Bioethics. December 23, 2016
    This article asks whether enhancement can truly lead to something beyond humanity, or whether it is, itself, an inherently human act. The ‘posthuman’ is an uncertain proposition. What, exactly, would one be? Many commentators suggest it to be an endpoint for the use of enhancement technologies, yet few choose to codify the term outright; which frequently leads to unnecessary confusion. Characterizing and contextualizing the term, particularly its more novel uses, is therefore a valuable enterprise. The abuse of the term ‘Human’, especially in the context of the enhancement debate and the myriad meanings ascribed to it, could give ‘posthuman’ very different slants depending on one's assumptions. There are perhaps three main senses in which the term ‘human’ is employed: the biological, the moral, and the self‐idealizing. In the first of these, ‘human’ is often conflated with Homo sapiens, and used interchangeably to denote species; in the second, ‘human’ (or ‘humanity’) generally refers to a community of beings which qualify as having a certain moral value; and the third, the self‐idealizing sense, is more descriptive; a label denoting the qualities that make us who we are as beings, or ‘what matters about those who matter’. So, what might enhancement make us? A novel species or genus of hominid? Or, perhaps, a morally more valuable being than a regular human? Of course, there's a third option: that a posthuman is a being which embodies our self‐ideal more successfully than we do ourselves – one ‘more human than human’. Which to choose?
    December 23, 2016   doi: 10.1111/bioe.12318   open full text
  • The Invisible Discrimination Before Our Eyes: A Bioethical Analysis.
    Francesca Minerva.
    Bioethics. December 23, 2016
    The goal of this article is to introduce a philosophical analysis of a widely neglected condition which affects between 3% and 18% of the population. People affected by this condition (which will be revealed later in the article) experience a lower level of wellbeing than the average population and are discriminated against in both their professional and their personal life. I will argue that this form of discrimination should be taken more seriously in philosophical debate and that social, legal and medical measures ought to be taken in order to improve the quality of life of people affected by this condition.
    December 23, 2016   doi: 10.1111/bioe.12327   open full text
  • Conscientious Objection to Vaccination.
    Steve Clarke, Alberto Giubilini, Mary Jean Walker.
    Bioethics. December 23, 2016
    Vaccine refusal occurs for a variety of reasons. In this article we examine vaccine refusals that are made on conscientious grounds; that is, for religious, moral, or philosophical reasons. We focus on two questions: first, whether people should be entitled to conscientiously object to vaccination against contagious diseases (either for themselves or for their children); second, if so, to what constraints or requirements should conscientious objection (CO) to vaccination be subject. To address these questions, we consider an analogy between CO to vaccination and CO to military service. We argue that conscientious objectors to vaccination should make an appropriate contribution to society in lieu of being vaccinated. The contribution to be made will depend on the severity of the relevant disease(s), its morbidity, and also the likelihood that vaccine refusal will lead to harm. In particular, the contribution required will depend on whether the rate of CO in a given population threatens herd immunity to the disease in question: for severe or highly contagious diseases, if the population rate of CO becomes high enough to threaten herd immunity, the requirements for CO could become so onerous that CO, though in principle permissible, would be de facto impermissible.
    December 23, 2016   doi: 10.1111/bioe.12326   open full text
  • Objection to Conscience: An Argument Against Conscience Exemptions in Healthcare.
    Alberto Giubilini.
    Bioethics. December 23, 2016
    I argue that appeals to conscience do not constitute reasons for granting healthcare professionals exemptions from providing services they consider immoral (e.g. abortion). My argument is based on a comparison between a type of objection that many people think should be granted, i.e. to abortion, and one that most people think should not be granted, i.e. to antibiotics. I argue that there is no principled reason in favour of conscientious objection qua conscientious that allows to treat these two cases differently. Therefore, I conclude that there is no principled reason for granting conscientious objection qua conscientious in healthcare. What matters for the purpose of justifying exemptions is not whether an objection is ‘conscientious’, but whether it is based on the principles and values informing the profession. I provide examples of acceptable forms of objection in healthcare.
    December 23, 2016   doi: 10.1111/bioe.12333   open full text
  • The Substance View: A Critique (Part 3).
    Rob Lovering.
    Bioethics. December 23, 2016
    In my articles ‘The Substance View: A Critique’ and ‘The Substance View: A Critique (Part 2),’ I raise objections to the substance view (naturally), a theory of intrinsic value and moral standing defended by a number of contemporary moral philosophers, including Robert P. George, Patrick Lee, Christopher Tollefsen, and Francis Beckwith. In part one of my critique of the substance view, I raise reductio‐style objections to the substance view's conclusion that the standard human fetus has the same intrinsic value and moral standing as the standard adult human being, among other human beings. In part two, I raise objections to some of the premises invoked in support of that conclusion. Here, in part three, I raise objections to Henrik Friberg‐Fernros's attempt to rebut some of the aforementioned objections.
    December 23, 2016   doi: 10.1111/bioe.12330   open full text
  • When is a Choice not a Choice? ‘Sham Offers’ and the Asymmetry of Adolescent Consent and Refusal.
    Neil C. Manson.
    Bioethics. December 23, 2016
    In some jurisdictions there is a puzzling asymmetry between consent and refusal, where, for some kinds of treatment, the adolescent patient has the power to permit her own treatment but her refusal does not have the same kind of normative significance as refusal of treatment by a competent adult. In this journal I recently offered a clarification and defence of this asymmetry in terms of a paternalistic justification of the sharing of normative powers between adolescents and other parties. Lawlor (2016) offers a number of objections to this account. Three of his objections can be dealt with quickly. But one of them is much more challenging: the asymmetry of consent and refusal entails a practice of making sham offers (offers that purport to be responsive to the patient's choices, but which, in fact, are not). They do not really offer a choice at all. Genuine offers seem to require a commitment to be symmetrically responsive to whatever decision outcome is reached by the recipient of the offer. When we reflect upon the way that offers can be made in complex social contexts, where different parties have a ‘say’ in what ought to be done, the symmetry of responsiveness need not apply. Offers can be genuine, without being symmetrically responsive. Contrary to the seemingly plausible objection, the asymmetry of consent and refusal does not entail sham offers, or the offer of ‘sham choices’.
    December 23, 2016   doi: 10.1111/bioe.12328   open full text
  • Is Mitochondrial Donation Germ‐Line Gene Therapy? Classifications and Ethical Implications.
    Ainsley J. Newson, Anthony Wrigley.
    Bioethics. December 14, 2016
    The classification of techniques used in mitochondrial donation, including their role as purported germ‐line gene therapies, is far from clear. These techniques exhibit characteristics typical of a variety of classifications that have been used in both scientific and bioethics scholarship. This raises two connected questions, which we address in this paper: (i) how should we classify mitochondrial donation techniques?; and (ii) what ethical implications surround such a classification? First, we outline how methods of genetic intervention, such as germ‐line gene therapy, are typically defined or classified. We then consider whether techniques of mitochondrial donation fit into these, whether they might do so with some refinement of these categories, or whether they require some other approach to classification. To answer the second question, we discuss the relationship between classification and several key ethical issues arising from mitochondrial donation. We conclude that the properties characteristic of mitochondrial inheritance mean that most mitochondrial donation techniques belong to a new sub‐class of genetic modification, which we call ‘conditionally inheritable genomic modification’ (CIGM).
    December 14, 2016   doi: 10.1111/bioe.12312   open full text
  • Mitochondrial Replacement Techniques: Who are the Potential Users and will they Benefit?
    Cathy Herbrand.
    Bioethics. December 14, 2016
    In February 2015 the UK became the first country to legalise high‐profile mitochondrial replacement techniques (MRTs), which involve the creation of offspring using genetic material from three individuals. The aim of these new cell reconstruction techniques is to prevent the transmission of maternally inherited mitochondrial disorders to biological offspring. During the UK debates, MRTs were often positioned as a straightforward and unique solution for the ‘eradication’ of mitochondrial disorders, enabling hundreds of women to have a healthy, biologically‐related child. However, many questions regarding future applications and potential users remain. Drawing on a current qualitative study on reproductive choices in the context of mitochondrial disorders, this article illustrates how the potential limitations of MRTs have been obscured in public debates by contrasting the claims made about the future beneficiaries with insights from families affected by mitochondrial disorders and medical experts. The analysis illuminates the complex choices with which families and individuals affected by mitochondrial disorders are faced, which have thus far remained invisible. An argument is presented for improved information for the public as well as an intensification of critical empirical research around the complex and specific needs of future beneficiaries of new reproductive biotechnologies.
    December 14, 2016   doi: 10.1111/bioe.12311   open full text
  • A Mitochondrial Story: Mitochondrial Replacement, Identity and Narrative.
    Jackie Leach Scully.
    Bioethics. December 14, 2016
    Mitochondrial replacement techniques (MRT) are intended to avoid the transmission of mitochondrial diseases from mother to child. MRT represent a potentially powerful new biomedical technology with ethical, policy, economic and social implications. Among other ethical questions raised are concerns about the possible effects on the identity of children born from MRT, their families, and the providers or donors of mitochondria. It has been suggested that MRT can influence identity (i) directly, through altering the genetic makeup and physical characteristics of the child, or (ii) indirectly through changing the child's experience of disease, and by generating novel intrafamilial relationships that shape the sense of self. In this article I consider the plausibility and ethical implications of these proposed identity effects, but I focus instead on a third way in which identity may be affected, through the mediating influence of the wider social world on MRT effects on identity. By taking a narrative approach, and examining the nature and availability of identity narratives, I conclude that while neither direct genetic nor indirect experiential effects can be excluded, social responses to MRT are more likely to have a significant and potentially damaging influence on the generation of MRT children's narratives of identity. This conclusion carries some implications for the collective moral responsibility we hold to ensure that MRT, if implemented, are practised in ethically justifiable ways.
    December 14, 2016   doi: 10.1111/bioe.12310   open full text
  • Ethics of Mitochondrial Replacement Techniques: A Habermasian Perspective.
    César Palacios‐González.
    Bioethics. December 14, 2016
    Jürgen Habermas is regarded as a central bioconservative commentator in the debate on the ethics of human prenatal genetic manipulations. While his main work on this topic, The Future of Human Nature, has been widely examined in regard to his position on prenatal genetic enhancement, his arguments regarding prenatal genetic therapeutic interventions have for the most part been overlooked. In this work I do two things. First, I present the three necessary conditions that Habermas establishes for a prenatal genetic manipulation to be regarded as morally permissible. Second, I examine if mitochondrial replacement techniques meet these necessary conditions. I investigate, specifically, the moral permissibility of employing pronuclear transfer and maternal spindle transfer. I conclude that, according to a Habermasian perspective on prenatal genetic manipulation, maternal spindle transfer (without using a preselected sperm and egg) and pronuclear transfer are morally impermissible. Maternal spindle transfer is, in principle, morally permissible, but only when we have beforehand preselected a sperm and an egg for our reproductive purpose. These findings are relevant for bioconservatives, both for those who hold a Habermasian stance and for those who hold something akin to a Habermasian stance, because they answer the question: what should bioconservatives do regarding mitochondrial replacement techniques? In fact, the answer to this question does not only normatively prescribe what bioconservatives should do in terms of their personal morality, but it also points towards what kind of legislation regulating mitochondrial replacement techniques they should aim at.
    December 14, 2016   doi: 10.1111/bioe.12307   open full text
  • Do Mitochondrial Replacement Techniques Affect Qualitative or Numerical Identity?
    S. Matthew Liao.
    Bioethics. December 14, 2016
    Mitochondrial replacement techniques (MRTs), known in the popular media as 'three‐parent' or 'three‐person' IVFs, have the potential to enable women with mitochondrial diseases to have children who are genetically related to them but without such diseases. In the debate regarding whether MRTs should be made available, an issue that has garnered considerable attention is whether MRTs affect the characteristics of an existing individual or whether they result in the creation of a new individual, given that MRTs involve the genetic manipulation of the germline. In other words, do MRTs affect the qualitative identity or the numerical identity of the resulting child? For instance, a group of panelists on behalf of the UK Human Fertilisation and Embryology Authority (HFEA) has claimed that MRTs affect only the qualitative identity of the resulting child, while the Working Group of the Nuffield Council on Bioethics (NCOB) has argued that MRTs would create a numerically distinct individual. In this article, I shall argue that MRTs do create a new and numerically distinct individual. Since my explanation is different from the NCOB's explanation, I shall also offer reasons why my explanation is preferable to the NCOB's explanation.
    December 14, 2016   doi: 10.1111/bioe.12308   open full text
  • Human Nuclear Genome Transfer (So‐Called Mitochondrial Replacement): Clearing the Underbrush.
    Françoise Baylis.
    Bioethics. December 14, 2016
    In this article, I argue that there is no compelling therapeutic ‘need’ for human nuclear genome transfer (so‐called mitochondrial replacement) to prevent mitochondrial diseases caused by mtDNA mutations. At most there is a strong interest in (i.e. ‘want’ for) this technology on the part of some women and couples at risk of having children with mitochondrial disease, and perhaps also a ‘want’ on the part of some researchers who see the technology as a useful precedent – one that provides them with ‘a quiet way station’ in which to refine the micromanipulations techniques essential for other human germline interventions and human cloning. In advance of this argument, I review basic information about mitochondrial disease and novel genetic strategies to prevent the transmission of mutated mitochondria. Next, I address common features of contemporary debates and discussions about so‐called mitochondrial replacement. First, I contest the cliché that science‐and‐(bio)technology is fast outpacing ethics. Second, I dispute the accuracy of the term ‘mitochondrial replacement’. Third, I provide a sustained critique of the purported ‘need’ for genetically‐related children. In closing, I call into question the mainly liberal defense of human nuclear genome transfer. I suggest an alternative frame of reference that pays particular attention to issues of social justice. I conclude that our limited resources (time, talent, human eggs, and money) should be carefully expended in pursuit of the common good, which does not include pandering to acquired desires (i.e., wants).
    December 14, 2016   doi: 10.1111/bioe.12309   open full text
  • Ethical, Legal, and Social Implications of Personalized Genomic Medicine Research: Current Literature and Suggestions for the Future.
    Shawneequa L. Callier, Rachel Abudu, Maxwell J. Mehlman, Mendel E. Singer, Duncan Neuhauser, Charlisse Caga‐Anan, Georgia L. Wiesner.
    Bioethics. October 21, 2016
    Purpose: This review identifies the prominent topics in the literature pertaining to the ethical, legal, and social issues (ELSI) raised by research investigating personalized genomic medicine (PGM). Methods: The abstracts of 953 articles extracted from scholarly databases and published during a 5‐year period (2008–2012) were reviewed. A total of 299 articles met our research criteria and were organized thematically to assess the representation of ELSI issues for stakeholders, health specialties, journals, and empirical studies. Results: ELSI analyses were published in both scientific and ethics journals. Investigational research comprised 45% of the literature reviewed (135 articles) and the remaining 55% (164 articles) comprised normative analyses. Traditional ELSI concerns dominated the discourse including discussions about disclosure of research results. In fact, there was a dramatic increase in the number of articles focused on the disclosure of research results and incidental findings to research participants. Few papers focused on particular disorders, the use of racial categories in research, international communities, or special populations (e.g., adolescents, elderly patients, or ethnic groups). Conclusion: Considering that strategies in personalized medicine increasingly target individuals’ unique health conditions, environments, and ancestries, further analysis is needed on how ELSI scholarship can better serve the increasingly global, interdisciplinary, and diverse PGM research community.
    October 21, 2016   doi: 10.1111/bioe.12285   open full text
  • Assisted Suicide in Switzerland: Clarifying Liberties and Claims.
    Samia A. Hurst, Alex Mauron.
    Bioethics. October 21, 2016
    Assisting suicide is legal in Switzerland if it is offered without selfish motive to a person with decision‐making capacity. Although the ‘Swiss model’ for suicide assistance has been extensively described in the literature, the formally and informally protected liberties and claims of assistors and recipients of suicide assistance in Switzerland are incompletely captured in the literature. In this article, we describe the package of rights involved in the ‘Swiss model’ using the framework of Hohfeldian rights as modified by Wenar. After outlining this framework, we dissect the rights involved in suicide assistance in Switzerland, and compare it with the situation in England and Germany. Based on this approach, we conclude that in Switzerland, claim rights exist for those requesting suicide assistance, and for those who are considering providing such assistance, even though no entitlements exist toward suicide assistance. We then describe the implementation of the ‘Swiss model’ and difficulties arising within it. Clarifying these issues is important to understand the Swiss situation, to evaluate what features of it may or may not be worth correcting or emulating, and to understand how it can impact requests for suicide assistance in other countries due to ‘suicide tourism’. It is also important to understand exactly what sets Switzerland apart from other countries with different legislations regarding suicide assistance.
    October 21, 2016   doi: 10.1111/bioe.12304   open full text
  • Misplaced Paternalism and other Mistakes in the Debate over Kidney Sales.
    Luke Semrau.
    Bioethics. October 21, 2016
    Erik Malmqvist defends the prohibition on kidney sales as a justifiable measure to protect individuals from harms they have not autonomously chosen. This appeal to ‘group soft paternalism’ requires that three conditions be met. It must be shown that some vendors will be harmed, that some will be subject to undue pressure to vend, and that we cannot feasibly distinguish between the autonomous and the non‐autonomous. I argue that Malmqvist fails to demonstrate that any of these conditions are likely to obtain. His argument involves two common errors. First, he, like many, proceeds on a mistaken understanding of how to assess harm. What matters is not the balance of costs and benefits of vending, but a comparison of potential vendors’ welfare across two possible courses of action. Second, Malmqvist's concerns about third‐party pressure are predicated on an empirically unrealistic understanding of the operation of a regulated market. A widely underappreciated fact is that kidney sales will be relatively rare, and most who try to vend will be unable to. Because pressure on another to vend will not result in the desired outcome, few will exert it.
    October 21, 2016   doi: 10.1111/bioe.12303   open full text
  • A Critique of Henrik Friberg‐Fernros's Defense of the Substance View.
    William Simkulet.
    Bioethics. September 30, 2016
    Proponents of the substance view contend that abortion is seriously morally wrong because it is killing something with the same inherent value and right to life as you or I. Rob Lovering offers two innovative criticisms of the anti‐abortion position taken by the substance view – the rescue argument and the problem of spontaneous abortion. Henrik Friberg‐Fernros offers an interesting response to Lovering, but one I argue would be inconsistent with the anti‐abortion stance taken by most substance view theorists.
    September 30, 2016   doi: 10.1111/bioe.12289   open full text
  • Intention and Moral Enhancement.
    William Simkulet.
    Bioethics. September 30, 2016
    Recently philosophers have proposed a wide variety of interventions referred to as ‘moral enhancements’. Some of these interventions are concerned with helping individuals make more informed decisions; others, however, are designed to compel people to act as the intervener sees fit. Somewhere between these two extremes lie interventions designed to direct an agent's attention either towards morally relevant issues – hat‐hanging – or away from temptations to do wrong – hat‐hiding. I argue that these interventions fail to constitute genuine moral enhancement because, although they may result in more desirable outcomes – more altruism, more law‐following, and/or less self‐destructive behavior, they ignore a person's intentions, and often what makes an action right or wrong is the intent behind it.
    September 30, 2016   doi: 10.1111/bioe.12284   open full text
  • What Justifies a Future with Humans in It?
    Timothy F. Murphy.
    Bioethics. September 26, 2016
    Antinatalist commentators recommend that humanity bring itself to a close, on the theory that pain and suffering override the value of any possible life. Other commentators do not require the voluntary extinction of human beings, but they defend that outcome if people were to choose against having children. Against such views, Richard Kraut has defended a general moral obligation to people the future with human beings until the workings of the universe render such efforts impossible. Kraut advances this view on the grounds that we are obliged to exercise beneficence toward others and on the grounds that the goods available in human lives are morally compelling. This account ultimately succeeds in making no more than a prima facie defense of human perpetuation because considerations of beneficence could override – in some cases probably should – override any duty to perpetuate human beings. While the goods of human life may be distinctive, they cannot serve as reason‐giving in regard to their own perpetuation. Ironically, the exercise of beneficence may authorize the extinction of human beings, if it becomes possible to enhance the goods available to human descendants in a way that moves them away from human nature as now given. The defense of a morally obligatory and strictly human future remains elusive, even as it becomes morally desirable to work against Fateful Catastrophes, those human‐caused events that threaten to extinguish existing lives already good and enriching for their bearers.
    September 26, 2016   doi: 10.1111/bioe.12290   open full text
  • Biomedical Enhancement and Social Development: A Conservative Techno‐Fix.
    Sagar Sanyal.
    Bioethics. September 26, 2016
    Allen Buchanan has argued for a linking of the ethics of human enhancement to the ethics of development more generally. The promise of the ‘enhancement enterprise' is that it may help develop society, just as other technological advances have in the past. He proposes a framework of intellectual property rights, government action to ensure the poor can access the enhancements, an international organization to administer the diffusion of new enhancement technologies from the West to poor countries, and the diffusion within countries to the poorer populations. I take seriously his proposal of discussing biomedical enhancement in terms of the ethics of development. On these grounds of assessment, I argue that his proposal is politically conservative. To make the case, I distinguish conservatism in ethics from conservatism in politics; and I contextualize the proposal against the background of development economics and the neoliberal approach to development.
    September 26, 2016   doi: 10.1111/bioe.12277   open full text
  • Two Kinds of Suicide.
    Govert den Hartogh.
    Bioethics. September 26, 2016
    In suicidology, the common view is that ‘rational’ suicides occur only rarely, because the competence of people who want to end their lives is compromised by mental illness. In the Netherlands and Flanders, however, patients’ requests for euthanasia or assistance in suicide are granted in 5300 and 1400 cases a year respectively, and in all these cases at least two doctors have confirmed the patient's competence. The combination of these two findings is puzzling. In other countries one would expect at least some of these people to end their own lives. The article argues that we can distinguish between two types of suicide with clustering characteristics. In cases of the first type, the agent doesn't carefully plan his action, doesn't communicate his plans to relatives or others, and uses violent means. In such cases it is reasonable to presume lack of competence. The other type has the opposite characteristics. The most plausible explanation of our problem is that suicides of the second kind are invisible to suicidology, because they tend not to be registered as suicides at all.
    September 26, 2016   doi: 10.1111/bioe.12287   open full text
  • Doctors Have no Right to Refuse Medical Assistance in Dying, Abortion or Contraception.
    Julian Savulescu, Udo Schuklenk.
    Bioethics. September 22, 2016
    In an article in this journal, Christopher Cowley argues that we have ‘misunderstood the special nature of medicine, and have misunderstood the motivations of the conscientious objectors’. We have not. It is Cowley who has misunderstood the role of personal values in the profession of medicine. We argue that there should be better protections for patients from doctors' personal values and there should be more severe restrictions on the right to conscientious objection, particularly in relation to assisted dying. We argue that eligible patients could be guaranteed access to medical services that are subject to conscientious objections by: (1) removing a right to conscientious objection; (2) selecting candidates into relevant medical specialities or general practice who do not have objections; (3) demonopolizing the provision of these services away from the medical profession.
    September 22, 2016   doi: 10.1111/bioe.12288   open full text
  • Why Gametes are not Like Enriched Uranium.
    Andrew Botterell.
    Bioethics. September 15, 2016
    According to Rivka Weinberg, gametes are like enriched uranium: both are hazardous materials. Exposing human beings to enriched uranium can result in radioactivity and decreased life expectancy, while exposing sperm and ova to each other can result in the creation of needy innocent persons with full moral status. Weinberg argues that when we engage in activities that put our gametes at risk of joining with others and growing into persons, we assume the costs of that risky activity. She calls this the Hazmat Theory of parental responsibility. The theory is novel and important, and has far‐reaching consequences for the ethics of procreation, parenting, and population, implying among other things that that the only way to avoid acquiring parental responsibilities may be to “abstain from sexual intercourse or surgically interfere with our gamete‐release system.” For these reasons the theory merits careful scrutiny. In this article I criticize the theory's account of how parental responsibility is acquired and its treatment of the standard of care expected of gamete possessors, and argue that it fails to properly account for a distinction between procreative costs and parental responsibility. Even if gametes are hazardous, it does not follow that parental responsibility in Weinberg's sense is acquired whenever one brings new persons into existence.
    September 15, 2016   doi: 10.1111/bioe.12283   open full text
  • Meta Consent – A Flexible Solution to the Problem of Secondary Use of Health Data.
    Thomas Ploug, Søren Holm.
    Bioethics. September 15, 2016
    In this article we provide an in‐depth description of a new model of informed consent called ‘meta consent’ and consider its practical implementation. We explore justifications for preferring meta consent over alternative models of consent as a solution to the problem of secondary use of health data for research. We finally argue that meta consent strikes an appropriate balance between enabling valuable research and protecting the individual.
    September 15, 2016   doi: 10.1111/bioe.12286   open full text
  • Developing Autonomy and Transitional Paternalism.
    Faye Tucker.
    Bioethics. September 15, 2016
    Adolescents, in many jurisdictions, have the power to consent to life saving treatment but not necessarily the power to refuse it. A recent defence of this asymmetry is Neil Manson's theory of ‘transitional paternalism’. Transitional paternalism holds that such asymmetries are by‐products of sharing normative powers. However, sharing normative powers by itself does not entail an asymmetry because transitional paternalism can be implemented in two ways. Manson defends the asymmetry‐generating version of transitional paternalism in the clinical context, arguing that it maximizes respect for adolescent autonomy. This article offers an alternative argument in favour of the asymmetry‐generating form of transitional paternalism, one that makes appeal to obligations that individuals have to develop self‐governance in others. We should share normative powers asymmetrically in the clinical context for three reasons. First, the asymmetric version of transitional paternalism takes seriously duties to support adolescents’ developing autonomy, alongside other duties that adults have to young people. It does so by enabling young people to be involved in important decisions that they would otherwise be excluded from. This is of value because participation of this sort is central to the cultivation of their self‐governance. Second, only the asymmetric version gives young people a voice in respect of all clinical actions, and only the asymmetric version leaves open the possibility that the coarse lines of legislation might be ‘fine‐tuned’ in individual cases. Third, the asymmetric sharing of normative powers is consistent with the kind of social arrangements that best support autonomy.
    September 15, 2016   doi: 10.1111/bioe.12280   open full text
  • Active and Passive Physician‐Assisted Dying and the Terminal Disease Requirement.
    Jukka Varelius.
    Bioethics. September 15, 2016
    The view that voluntary active euthanasia and physician‐assisted suicide should be made available for terminal patients only is typically warranted by reference to the risks that the procedures are seen to involve. Though they would appear to involve similar risks, the commonly endorsed end‐of‐life practices referred to as passive euthanasia are available also for non‐terminal patients. In this article, I assess whether there is good reason to believe that the risks in question would be bigger in the case of voluntary active euthanasia and physician‐assisted suicide than in that of passive euthanasia. I propose that there is not. On that basis, I suggest that limiting access to voluntary active euthanasia and physician‐assisted suicide to terminal patients only is not consistent with accepting the existing practices of passive euthanasia.
    September 15, 2016   doi: 10.1111/bioe.12282   open full text
  • Body Dysmorphic Disorder: Contraindication or Ethical Justification for Female Genital Cosmetic Surgery in Adolescents.
    Merle Spriggs, Lynn Gillam.
    Bioethics. September 09, 2016
    Is Female Genital Cosmetic Surgery for an adolescent with Body Dysmorphic Disorder ever ethically justified? Cosmetic genital surgery (specifically labioplasty) for adolescent girls is one of the most ethically controversial forms of cosmetic surgery and Body Dysmorphic Disorder is typically seen as a contraindication for cosmetic surgery. Two key ethical concerns are (1) that Body Dysmorphic Disorder undermines whatever capacity for autonomy the adolescent has; and (2) even if there is valid parental consent, the presence of Body Dysmorphic Disorder means that cosmetic surgery will fail in its aims. In this article, we challenge, in an evidence‐based way, the standard view that Body Dysmorphic Disorder is a contraindication for genital cosmetic surgery in adolescents. Our argument gathers together and unifies a substantial amount of disparate research in the context of an ethical argument. We focus on empirical questions about benefit and harm, because these are ethically significant. Answers to these questions affect the answer to the ethical question. We question the claim that there would be no benefit from surgery in this situation, and we consider possible harms that might be done if treatment is refused. For an adolescent with Body Dysmorphic Disorder, the most important thing may be to avoid harm. We find ourselves arguing for the ethical justifiability of cosmetic labioplasty for an adolescent with Body Dysmorphic Disorder, even though we recognize that it is a counter intuitive position. We explain how we reached our conclusion.
    September 09, 2016   doi: 10.1111/bioe.12278   open full text
  • Pro‐Life Arguments Against Infanticide and Why they are Not Convincing.
    Joona Räsänen.
    Bioethics. September 09, 2016
    Alberto Giubilini and Francesca Minerva's controversial article ‘After‐Birth Abortion: Why Should the Baby Live?’ has received a lot of criticism since its publishing. Part of the recent criticism has been made by pro‐life philosopher Christopher Kaczor, who argues against infanticide in his updated book ‘Ethics of Abortion’. Kaczor makes four arguments to show where Giubilini and Minerva's argument for permitting infanticide goes wrong. In this article I argue that Kaczor's arguments, and some similar arguments presented by other philosophers, are mistaken and cannot show Giubilini and Minerva's view to be flawed. I claim that if one wants to reject the permissibility of infanticide, one must find better arguments for doing so.
    September 09, 2016   doi: 10.1111/bioe.12281   open full text
  • Self‐Euthanasia, the Dutch Experience: In Search for the Meaning of a Good Death or Eu Thanatos.
    Ton Vink.
    Bioethics. September 09, 2016
    My main purpose in this article is to establish the meaning of a ‘good death’ when death is self‐chosen. I will take as my point of departure the new notion of ‘self‐euthanasia’ and the corresponding practice that has evolved in the Netherlands in recent years. Both physician‐euthanasia and self‐euthanasia refer to an ideal process of a good death, the first being ultimately the physician's responsibility, while the second is definitely the responsibility of the individual choosing to die. However, if we also accept the existence of a fundamental moral difference between ending another person's life and ending your own life, and if we accept this moral difference to be also relevant to the normatively laden good death, then this difference represents a strong reason for preferring self‐euthanasia to physician‐euthanasia.
    September 09, 2016   doi: 10.1111/bioe.12279   open full text
  • Addiction, Heroin‐Assisted Treatment and the Idea of Abstinence: A reply to Henden.
    Susanne Uusitalo, Barbara Broers.
    Bioethics. September 09, 2016
    In our previous article on the question whether heroin addicts are able to give informed consent voluntarily to research on heroin‐assisted treatment, we criticized the ongoing bioethical discussion of a flawed conceptualization of heroin addicts' options. As a participant in this discussion, Edmund Henden defends the conceptualization as sufficient for determining whether heroin addicts are able to give informed consent to the research on heroin‐assisted treatment voluntarily. This discussion on research on heroin‐assisted treatment seems to go astray in several respects. In his reply to our article Henden maintains some of the biases, such as the necessity of abstinence in recovery, that seem to prevail in addiction research on a more general level as well. These biases run the danger of having implausible ethical implications on stakeholders in addiction research and treatment. In our reply to him, we will further clarify and discuss the importance of describing the relevant issues in plausible terms that do justice to the realities of the cases of informed consent in research on heroin‐assisted treatment and also raise a wider issue of the ethics of wording as well as of the narrow scope, or ‘tunnel vision’, in addiction research as currently conducted.
    September 09, 2016   doi: 10.1111/bioe.12276   open full text
  • What can we Learn from Patients’ Ethical Thinking about the right ‘not to know’ in Genomics? Lessons from Cancer Genetic Testing for Genetic Counselling.
    Lorraine Cowley.
    Bioethics. August 15, 2016
    This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer (Lynch Syndrome). 50 were invited to participate (42 were tested; eight declined genetic testing). 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees’ experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as ‘common sense’; the idea of choice around the decision was negated and replaced by a moral imperative to be tested. Those who did not follow ‘common sense’ were judged to be imprudent. Family members who declined testing were discussed negatively by participants. The article addresses what is ethically problematic about how test decliners were discussed and whether these ethical concerns extend to others who are offered genetic testing. Discussions showed that genetic testing was viewed as both an autonomous choice and a responsibility. Yet the apparent conflict between the right to autonomy and the moral imperative of responsibility allowed participants to defend test decliners’ decisions by expressing a preference for or defending choice over responsibility. The ‘right not to know’ seemed an important moral construct to help ethically manage unpopular decisions made by close family who declined testing. In light of this research, the erosion of the ‘right not to know’ in the genomic age could have subtle yet profound consequences for family relationships.
    August 15, 2016   doi: 10.1111/bioe.12272   open full text
  • Sperm, Clinics, and Parenthood.
    Reuven Brandt.
    Bioethics. August 15, 2016
    In this article I examine a recent approach to regulating assisted reproduction, whereby use of some kind of medical intervention ‘triggers’ laws governing legal parenthood that are more favourable to intending parents and sperm providers. I argue that although perhaps an improvement on the previous legal framework, these laws are problematic for three important reasons. First, they are prone to violating parental rights and unjustly imposing substantial burdens on individuals. Second, they are discriminatory. Third, even if we take a pragmatic approach to the question of parenthood in these cases, these laws fail to properly consider the welfare interests of children. Finally, I conclude by showing that my argument does not entail adopting a laissez‐fair attitude to conception using third‐party sperm.
    August 15, 2016   doi: 10.1111/bioe.12270   open full text
  • Should we use Commitment Contracts to Regulate Student use of Cognitive Enhancing Drugs?
    John Danaher.
    Bioethics. August 12, 2016
    Are universities justified in trying to regulate student use of cognitive enhancing drugs? In this article I argue that they can be, but that the most appropriate kind of regulatory intervention is likely to be voluntary in nature. To be precise, I argue that universities could justifiably adopt a commitment contract system of regulation wherein students are encouraged to voluntarily commit to not using cognitive enhancing drugs (or to using them in a specific way). If they are found to breach that commitment, they should be penalized by, for example, forfeiting a number of marks on their assessments. To defend this model of regulation, I adopt a recently‐proposed evaluative framework for determining the appropriateness of enhancement in specific domains of activity, and I focus on particular existing types of cognitive enhancement drugs, not hypothetical or potential forms. In this way, my argument is tailored to the specific features of university education, and common patterns of usage among students. It is not concerned with the general ethical propriety of using cognitive enhancing drugs.
    August 12, 2016   doi: 10.1111/bioe.12273   open full text
  • Why Alcoholics Ought to Compete Equally for Liver Transplants.
    Alexander Zambrano.
    Bioethics. August 12, 2016
    Some philosophers and physicians have argued that alcoholic patients, who are responsible for their liver failure by virtue of alcoholism, ought to be given lower priority for a transplant when donated livers are being allocated to patients in need of a liver transplant. The primary argument for this proposal, known as the Responsibility Argument, is based on the more general idea that patients who require scarce medical resources should be given lower priority for those resources when they are responsible for needing them and when they are competing with patients who need the same resources through no fault of their own. Since alcoholic patients are responsible for needing a new liver and are in direct competition with other patients who need a new liver through no fault of their own, it follows that alcoholic patients ought to be given lower priority for a transplant. In this article, I argue against the Responsibility Argument by suggesting that in order for it to avoid the force of plausible counter examples, it must be revised to say that patients who are responsible for needing a scarce medical resource due to engaging in behavior that is not socially valuable ought to be given lower priority. I'll then argue that allocating organs according to social value is inconsistent or in tension with liberal neutrality on the good life. Thus, if one is committed to liberal neutrality, one ought to reject the Responsibility Argument.
    August 12, 2016   doi: 10.1111/bioe.12274   open full text
  • The Meta‐Nudge – A Response to the Claim That the Use of Nudges During the Informed Consent Process is Unavoidable.
    Scott D. Gelfand.
    Bioethics. July 13, 2016
    Richard Thaler and Cass Sunstein, in Nudge: Improving Decisions About Health, Wealth, and Happiness, assert that rejecting the use nudges is ‘pointless’ because ‘[i]n many cases, some kind of nudge is inevitable’. Schlomo Cohen makes a similar claim. He asserts that in certain situations surgeons cannot avoid nudging patients either toward or away from consenting to surgical interventions. Cohen concludes that in these situations (assuming surgeons believe that surgery is the best option for their patients), nudging patients toward consenting to surgical interventions is (at the very least) uncriticizable or morally permissible. I call this argument: The Unavoidability Argument. In this essay, I will respond to Cohen's use of the unavoidability argument in support of using nudges during the process of informed consent. Specifically, I argue that many so‐called ‘unavoidable nudges’ are, in fact, avoidable. Although my argument is directed toward Cohen's use of the unavoidability argument, it is applicable to the unavoidability argument more generally.
    July 13, 2016   doi: 10.1111/bioe.12266   open full text
  • How to Restore Fairness After Doping Infringement?
    Mika Hämäläinen.
    Bioethics. July 02, 2016
    This article addresses the question how to restore the biggest possible amount of fairness after a discovery of doping infringement. I will analyse eight actions that could be taken: (1) disqualification and re‐ranking, (2) change in official result, (3) medal stripping and medal re‐awarding, (4) ban, (5) rematch, (6) legal action, (7) apology and (8) forgiveness. I conclude that the best way to restore the biggest possible amount of fairness seems to be a selected combination of actions. I also propose that re‐ranking and medal re‐awarding should be accompanied by a ceremony in which the new winners are celebrated because they typically did not have the possibility of enjoying their success in front of the original audience.
    July 02, 2016   doi: 10.1111/bioe.12265   open full text
  • Incentivizing Patient Choices: The Ethics of Inclusive Shared Savings.
    Richard Yetter Chappell.
    Bioethics. July 02, 2016
    Is it ethical to pay patients for selecting cheaper medical treatments? The healthcare system in the United States is notoriously profligate, at least in part because when insurers foot the bill, patients have little incentive to avoid wasteful treatments. One familiar means for dealing with this problem is for insurers to offer reduced co‐pays to patients who select cheaper treatments. Would it be ethical to take this one step further, beyond the zero bound, sharing the savings of cheaper treatments by positively paying the patients who select them? Schmidt & Emanuel recently proposed this policy of ‘Inclusive Shared Savings’ (ISS). This article examines various ethical objections to the idea.
    July 02, 2016   doi: 10.1111/bioe.12267   open full text
  • Adversaries at the Bedside: Advance Care Plans and Future Welfare.
    Aidan Kestigian, Alex John London.
    Bioethics. May 23, 2016
    Advance care planning refers to the process of determining how one wants to be cared for in the event that one is no longer competent to make one's own medical decisions. Some have argued that advance care plans often fail to be normatively binding on caretakers because those plans do not reflect the interests of patients once they enter an incompetent state. In this article, we argue that when the core medical ethical principles of respect for patient autonomy, honest and adequate disclosure of information, institutional transparency, and concern for patient welfare are upheld, a policy that would allow for the disregard of advance care plans is self‐defeating. This is because when the four principles are upheld, a patient's willingness to undergo treatment depends critically on the willingness of her caretakers to honor the wishes she has outlined in her advance care plan. A patient who fears that her caretakers will not honor her wishes may choose to avoid medical care so as to limit the influence of her caretakers in the future, which may lead to worse medical outcomes than if she had undergone care. In order to avoid worse medical outcomes and uphold the four core principles, caregivers who are concerned about the future welfare of their patients should focus on improving advance care planning and commit to honoring their patients’ advance care plans.
    May 23, 2016   doi: 10.1111/bioe.12263   open full text
  • Intermediate Moral Respect and Proportionality Reasoning.
    Thomas Finegan.
    Bioethics. May 23, 2016
    In a recent article in this journal Jonathan Pugh critiques the idea of intermediate ‘moral respect’ which some say is owed to embryos. This concept is inherent within the ‘principle of proportionality’, the principle that destructive research on embryos is permissable only if the research serves an important purpose. Pugh poses two specific questions to proponents of the idea of intermediate moral respect. This article argues that while the questions posed by Pugh are certainly pertinent to the debate, the hypothetical responses he suggests to these questions do not quite get to the core of what is troublesome about the concept. The article suggests alternative responses to Pugh's questions in order to focus attention on more fundamental problems facing the idea of intermediate moral respect, while also pointing to how the intermediate moral respect proponent might best develop these responses. It goes on to argue that these hypothetical responses fail to answer convincingly the questions posed. More specifically, this article challenges two possible justifications for the distinct idea of intermediate moral respect, namely the argument from potentiality (the argument raised by Pugh) and an argument from the proportionality of fundamental moral status (not considered by Pugh). The article also raises a dilemma inherent in the application of the principle of proportionality to cases involving beings to which intermediate moral respect is owed even where it is allowed, ex hypothesi, that both the category of intermediate moral respect and the general proportionality reasoning underpinning the principle of proportionality are basically cogent. This article thus develops and adds to the challenge laid down by Pugh to proponents of the idea of intermediate moral respect.
    May 23, 2016   doi: 10.1111/bioe.12259   open full text
  • The use of Ethics Decision‐Making Frameworks by Canadian Ethics Consultants: A Qualitative Study.
    Chris Kaposy, Fern Brunger, Victor Maddalena, Richard Singleton.
    Bioethics. May 23, 2016
    In this study, Canadian healthcare ethics consultants describe their use of ethics decision‐making frameworks. Our research finds that ethics consultants in Canada use multi‐purpose ethics decision‐making frameworks, as well as targeted frameworks that focus on reaching an ethical resolution to a particular healthcare issue, such as adverse event reporting, or difficult triage scenarios. Several interviewees mention the influence that the accreditation process in Canadian healthcare organizations has on the adoption and use of such frameworks. Some of the ethics consultants we interviewed also report on their reluctance to use these tools. Limited empirical work has been done previously on the use of ethics decision‐making frameworks. This study begins to fill this gap in our understanding of the work of healthcare ethics consultants.
    May 23, 2016   doi: 10.1111/bioe.12262   open full text
  • Do We Know Whether Researchers and Reviewers are Estimating Risk and Benefit Accurately?
    Spencer Phillips Hey, Jonathan Kimmelman.
    Bioethics. May 16, 2016
    Accurate estimation of risk and benefit is integral to good clinical research planning, ethical review, and study implementation. Some commentators have argued that various actors in clinical research systems are prone to biased or arbitrary risk/benefit estimation. In this commentary, we suggest the evidence supporting such claims is very limited. Most prior work has imputed risk/benefit beliefs based on past behavior or goals, rather than directly measuring them. We describe an approach – forecast analysis – that would enable direct and effective measure of the quality of risk/benefit estimation. We then consider some objections and limitations to the forecasting approach.
    May 16, 2016   doi: 10.1111/bioe.12260   open full text
  • Medical Need, Equality, and Uncertainty.
    L. Chad Horne.
    Bioethics. May 16, 2016
    Many hold that distributing healthcare according to medical need is a requirement of equality. Most egalitarians believe, however, that people ought to be equal on the whole, by some overall measure of well‐being or life‐prospects; it would be a massive coincidence if distributing healthcare according to medical need turned out to be an effective way of promoting equality overall. I argue that distributing healthcare according to medical need is important for reducing individuals' uncertainty surrounding their future medical needs. In other words, distributing healthcare according to medical need is a natural feature of healthcare insurance; it is about indemnity, not equality.
    May 16, 2016   doi: 10.1111/bioe.12257   open full text
  • Integrated But Not Whole? Applying an Ontological Account of Human Organismal Unity to the Brain Death Debate.
    Melissa Moschella.
    Bioethics. May 10, 2016
    As is clear in the 2008 report of the President's Council on Bioethics, the brain death debate is plagued by ambiguity in the use of such key terms as ‘integration’ and ‘wholeness’. Addressing this problem, I offer a plausible ontological account of organismal unity drawing on the work of Hoffman and Rosenkrantz, and then apply that account to the case of brain death, concluding that a brain dead body lacks the unity proper to a human organism, and has therefore undergone a substantial change. I also show how my view can explain hard cases better than one in which biological integration (as understood by Alan Shewmon and the President's Council) is taken to imply ontological wholeness or unity.
    May 10, 2016   doi: 10.1111/bioe.12258   open full text
  • Bioethics and Climate Change: A Response to Macpherson and Valles.
    David B. Resnik.
    Bioethics. May 10, 2016
    Two articles published in Bioethics recently have explored the ways that bioethics can contribute to the climate change debate. Cheryl Cox Macpherson argues that bioethicists can play an important role in the climate change debate by helping the public to better understand the values at stake and the trade‐offs that must be made in individual and social choices, and Sean Valles claims that bioethicists can contribute to the debate by framing the issues in terms of the public health impacts of climate change. While Macpherson and Valles make valid points concerning a potential role for bioethics in the climate change debate, it is important to recognize that much more than ethical analysis and reflection will be needed to significantly impact public attitudes and government policies.
    May 10, 2016   doi: 10.1111/bioe.12261   open full text
  • The Case Against the Case for Procreative Beneficence (PB).
    Alan Holland.
    Bioethics. March 22, 2016
    Julian Savulescu's principle of procreative beneficence (PB) states that, other things being equal, and of the possible children they could have, a couple contemplating procreation are morally obliged to (attempt to) procreate the child with the best chance of the best life. The critique of PB is in three parts. The first part argues that PB rests on a particular conception of the good life, and that alternative conceptions of the good life afford no obvious way in which PB can be rendered operational. The second part identifies six flaws in the attempt to justify PB in terms of a particular conception of the good life according to which the best life is understood as the life with the most well‐being. The third part explores some of the uncertainties that surround the potential implications and ramifications of adopting the principle. The overall purpose is not to demonstrate that the principle is untenable, but only to demonstrate that no compelling reason has yet been given for adhering to it.
    March 22, 2016   doi: 10.1111/bioe.12253   open full text
  • Health Security and Risk Aversion.
    Jonathan Herington.
    Bioethics. March 16, 2016
    Health security has become a popular way of justifying efforts to control catastrophic threats to public health. Unfortunately, there has been little analysis of the concept of health security, nor the relationship between health security and other potential aims of public health policy. In this paper I develop an account of health security as an aversion to risky policy options. I explore three reasons for thinking risk avoidance is a distinctly worthwhile aim of public health policy: (i) that security is intrinsically valuable, (ii) that it is necessary for social planning and (iii) that it is an appropriate response to decision‐making in contexts of very limited information. Striking the right balance between securing and maximizing population health thus requires a substantive, and hitherto unrecognized, value judgment. Finally, I critically evaluate the current health security agenda in light of this new account of the concept and its relationship to the other aims of public health policy.
    March 16, 2016   doi: 10.1111/bioe.12255   open full text
  • Autonomy is a Right, Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research.
    Linus Johnsson, Stefan Eriksson.
    Bioethics. March 16, 2016
    Should people be involved as active participants in longitudinal medical research, as opposed to remaining passive providers of data and material? We argue in this article that misconceptions of ‘autonomy’ as a kind of feat rather than a right are to blame for much of the confusion surrounding the debate of dynamic versus broad consent. Keeping in mind two foundational facts of human life, freedom and dignity, we elaborate three moral principles – those of autonomy, integrity and authority – to better see what is at stake. Respect for autonomy is to recognize the other's right to decide in matters that are important to them. Respect for integrity is to meet, in one's relationship with the other, their need to navigate the intersection between private and social life. Respect for authority is to empower the other – to help them to cultivate their responsibility as citizens. On our account, to force information onto someone who does not want it is not to respect that person's autonomy, but to violate integrity in the name of empowerment. Empowerment, not respect for autonomy, is the aim that sets patient‐centred initiatives employing a dynamic consent model apart from other consent models. Whether this is ultimately morally justified depends on whether empowerment ought to be a goal of medical research, which is questionable.
    March 16, 2016   doi: 10.1111/bioe.12254   open full text
  • Protecting Future Children from In‐Utero Harm.
    Dominic Wilkinson, Loane Skene, Lachlan De crespigny, Julian Savulescu.
    Bioethics. February 12, 2016
    The actions of pregnant women can cause harm to their future children. However, even if the possible harm is serious and likely to occur, the law will generally not intervene. A pregnant woman is an autonomous person who is entitled to make her own decisions. A fetus in‐utero has no legal right to protection. In striking contrast, the child, if born alive, may sue for injury in‐utero; and the child is entitled to be protected by being removed from her parents if necessary for her protection. Indeed, there is a legal obligation for health professionals to report suspected harm, and for authorities to protect the child's wellbeing. We ask whether such contradictory responses are justified. Should the law intervene where a pregnant woman's actions risk serious and preventable fetal injury? The argument for legal intervention to protect a fetus is sometimes linked to the concept of ‘fetal personhood’ and the moral status of the fetus. In this article we will suggest that even if the fetus is not regarded as a separate person, and does not have the legal or moral status of a child, indeed, even if the fetus is regarded as having no legal or moral status, there is an ethical and legal case for intervening to prevent serious harm to a future child. We examine the arguments for and against intervention on behalf of the future child, drawing on the example of excessive maternal alcohol intake.
    February 12, 2016   doi: 10.1111/bioe.12238   open full text
  • Justice and Surgical Innovation: The Case of Robotic Prostatectomy.
    Katrina Hutchison, Jane Johnson, Drew Carter.
    Bioethics. February 12, 2016
    Surgical innovation promises improvements in healthcare, but it also raises ethical issues including risks of harm to patients, conflicts of interest and increased injustice in access to health care. In this article, we focus on risks of injustice, and use a case study of robotic prostatectomy to identify features of surgical innovation that risk introducing or exacerbating injustices. Interpreting justice as encompassing matters of both efficiency and equity, we first examine questions relating to government decisions about whether to publicly fund access to innovative treatments. Here the case of robotic prostatectomy exemplifies the difficulty of accommodating healthcare priorities such as improving the health of marginalized groups. It also illustrates challenges with estimating the likely long‐term costs and benefits of a new intervention, the difficulty of comparing outcomes of an innovative treatment to those of established treatments, and the further complexity associated with patient and surgeon preferences. Once the decision has been made to fund a new procedure, separate issues of justice arise at the level of providing care to individual patients. Here, the case of robotic prostatectomy exemplifies how features of surgical innovation, such as surgeon learning curves and the need for an adequate volume of cases at a treatment centre, can exacerbate injustices associated with treatment cost and the logistics of travelling for treatment. Drawing on our analysis, we conclude by making a number of recommendations for the just introduction of surgical innovations.
    February 12, 2016   doi: 10.1111/bioe.12252   open full text
  • Can a Welfarist Approach be Used to Justify a Moral Duty to Cognitively Enhance Children?
    Jenny Krutzinna.
    Bioethics. February 03, 2016
    The desire to self‐improve is probably as old as humanity: most of us want to be smarter, more athletic, more beautiful, or more talented. However, in the light of an ever increasing array of possibilities to enhance our capacities, clarity about the purpose and goal of such efforts becomes crucial. This is especially true when decisions are made for children, who are exposed to their parents’ plans and desires for them under a notion of increasing wellbeing. In recent years, cognitive enhancement has become a popular candidate for the promotion of wellbeing; welfarists even impose a moral duty on parents to cognitively enhance their children for the sake of their wellbeing. In this article, I aim to show that welfarists are mistaken in inferring such a moral obligation from the potential benefit of cognitive enhancement. In support of this, I offer three arguments: (a) the vagueness of wellbeing as a theoretical concept means it becomes impossible to apply in practice; (b) the link between cognition and wellbeing is far from unequivocal; and (c) quantification issues with regard to cognition make a duty impossible to discharge. In conclusion, I reject the welfarist approach as a justification for a parental moral obligation to cognitively enhance children.
    February 03, 2016   doi: 10.1111/bioe.12244   open full text
  • Are open‐Label Placebos Ethical? Informed Consent and Ethical Equivocations.
    Charlotte Blease, Luana Colloca, Ted J. Kaptchuk.
    Bioethics. February 03, 2016
    The doctor‐patient relationship is built on an implicit covenant of trust, yet it was not until the post‐World War Two era that respect for patient autonomy emerged as an article of mainstream medical ethics. Unlike their medical forebears, physicians today are expected to furnish patients with adequate information about diagnoses, prognoses and treatments. Against these dicta there has been ongoing debate over whether placebos pose a threat to patient autonomy. A key premise underlying medical ethics discussion is the notion that the placebo effect necessitates patient deception. Indeed, the American Medical Association guidelines imply that placebo treatment necessary entails a form of deception. As a consequence of this assumption, the fulcrum of debate on the use of placebo treatment has hinged on whether that deception is ever justified. Recently performed experiments with open‐label transparently prescribed placebos have begun to challenge the notion that deception is necessary in eliciting the placebo effect and such effects necessarily involve a binary distinction between autonomy and beneficence. In this article we focus on the content of disclosures in distinctive open‐label, transparently disclosed placebo studies and inquire whether they might be said to invoke deception in clinical contexts, and if so, whether the deception is unethical. We find that open placebos may be said to involve equivocation over how placebos work. However, drawing on surveys of patient attitudes we suggest that this equivocation appears to be acceptable to patients. We conclude that open placebos fulfil current American Medical Association guidelines for placebo use, and propose future research directions for harnessing the placebo effect ethically.
    February 03, 2016   doi: 10.1111/bioe.12245   open full text
  • Should Deceased Donation be Morally Preferred in Uterine Transplantation Trials?
    Nicola Williams.
    Bioethics. February 01, 2016
    In recent years much research has been undertaken regarding the feasibility of the human uterine transplant (UTx) as a treatment for absolute uterine factor infertility (AUFI). Should it reach clinical application this procedure would allow such individuals what is often a much‐desired opportunity to become not only social mothers (via adoption or traditional surrogacy arrangements), or genetic and social mothers (through gestational surrogacy) but mothers in a social, genetic and gestational sense. Like many experimental transplantation procedures such as face, hand, corneal and larynx transplants, UTx as a therapeutic option falls firmly into the camp of the quality of life (QOL) transplant, undertaken with the aim, not to save a life, but to enrich one. However, unlike most of these novel procedures – where one would be unlikely to find a willing living donor or an ethics committee that would sanction such a donation – the organs to be transplanted in UTx are potentially available from both living and deceased donors. In this article, in the light of the recent nine‐case research trial in Sweden which used uteri obtained from living donors, and the assertions on the part of a number of other research teams currently preparing trials that they will only be using deceased donors, I explore the question of whether, in the case of UTx, there exist compelling moral reasons to prefer the use of deceased donors despite the benefits that may be associated with the use of organs obtained from the living.
    February 01, 2016   doi: 10.1111/bioe.12247   open full text
  • Ethical Obligations in the Face of Dilemmas Concerning Patient Privacy and Public Interests: The Sasebo Schoolgirl Murder Case.
    Yasuhiro Kadooka, Taketoshi Okita, Atsushi Asai.
    Bioethics. February 01, 2016
    A murder case that had some features in common with the Tarasoff case occurred in Sasebo City, Japan, in 2014. A 15‐year‐old high school girl was murdered and her 16‐year‐old classmate was arrested on suspicion of homicide. One and a half months before the murder, a psychiatrist who had been examining the girl called a prefectural child consultation centre to warn that she might commit murder, but he did not reveal her name, considering it his professional duty to keep it confidential. Article 134 of the Japanese Criminal Law states that doctors should not disclose patient information obtained in clinical practice without a legitimate reason, but the Japanese Supreme Court has not specified what constitutes a legitimate reason. Mass media and commentators suggested that the murder could have been prevented if the psychiatrist had disclosed the girl's name to the authorities or had isolated her coercively in a psychiatric ward. However, the authors disagree with such claims. This article discusses obligations imposed on concerned individuals and third party members in cases involving ethical dilemmas regarding patient confidentiality and information disclosure. It is concluded that everyone should fulfill their obligations to prevent such tragedies and one should judge the appropriateness of others’ actions based not on the consequences of their actions, but on the processes used to decide on a course of action and their commitment. It is necessary for us to establish a society in which concerned parties can do what they think is ethically best without fearing ungrounded charges.
    February 01, 2016   doi: 10.1111/bioe.12249   open full text
  • Moral Enhancement and Those Left Behind.
    Alfred Archer.
    Bioethics. February 01, 2016
    Opponents to genetic or biomedical human enhancement often claim that the availability of these technologies would have negative consequences for those who either choose not to utilize these resources or lack access to them. However, Thomas Douglas has argued that this objection has no force against the use of technologies that aim to bring about morally desirable character traits, as the unenhanced would benefit from being surrounded by such people. I will argue that things are not as straightforward as Douglas makes out. The widespread use of moral enhancement would raise the standards for praise and blame worthiness, making it much harder for the unenhanced to perform praiseworthy actions or avoid performing blameworthy actions. This shows that supporters of moral enhancement cannot avoid this challenge in the way that Douglas suggests.
    February 01, 2016   doi: 10.1111/bioe.12251   open full text
  • Sentient Nonpersons and the Disvalue of Death.
    David DeGrazia.
    Bioethics. February 01, 2016
    Implicit in our everyday attitudes and practices is the assumption that death ordinarily harms a person who dies. A far more contested matter is whether death harms sentient individuals who are not persons, a category that includes many animals and some human beings. On the basis of the deprivation account of the harm of death, I argue that death harms sentient nonpersons (whenever their lives would be worth continuing). I next consider possible bases for the commonsense judgment that death ordinarily harms persons more than it harms sentient nonpersons. Contrary to what some philosophers believe, it is doubtful that the familiar resources of prudential value theory can vindicate this judgment. I show that the approach that at first glance seems most promising for supporting this judgment – namely, invoking an objective account of well‐being – faces substantial challenges, before arguing that McMahan's time‐relative interest account supplies the needed theoretical basis. I then go on to extract a significant practical implication of the first thesis, that death ordinarily harms sentient nonpersons: We should find a way to discontinue the routine killing of animal subjects following their use in experiments.
    February 01, 2016   doi: 10.1111/bioe.12250   open full text
  • Emergency Contraceptives and the Beginning of Human Animals.
    Eze Paez.
    Bioethics. January 13, 2016
    Emergency contraceptives may sometimes prevent implantation, thereby causing the death of the embryo. According to some positions contrary to abortion, because the embryo is a human animal, there are usually decisive moral reasons not to use them. In this article, I will show that objecting to the use of emergency contraceptives on those grounds is unjustified. If organisms are real existents, then according to the most plausible conception of what is required for a group of cells to compose one, the embryo cannot qualify as a single organism. On the other hand, if organisms are virtual objects, then whether or not the embryo qualifies as one is morally irrelevant. I conclude that even if those positions are right about the morality of abortion, they are not entitled to oppose the use of emergency contraceptives.
    January 13, 2016   doi: 10.1111/bioe.12242   open full text
  • Quantifying Health Across Populations.
    Stephen Kershnar.
    Bioethics. January 13, 2016
    In this article, I argue that as a theoretical matter, a population's health‐level is best quantified via averagism. Averagism asserts that the health of a population is the average of members’ health‐levels. This model is better because it does not fall prey to a number of objections, including the repugnant conclusion, and because it is not arbitrary. I also argue that as a practical matter, population health‐levels are best quantified via totalism. Totalism asserts that the health of a population is the sum of members’ health‐levels. Totalism is better here because it fits better with cost‐benefit analysis and such an analysis is the best practical way to value healthcare outcomes. The two results are compatible because the theoretical and practical need not always align, whether in general or in the context of population health.
    January 13, 2016   doi: 10.1111/bioe.12240   open full text
  • Enhancing Beyond What Ought to be the Case ‐ A Conceptual Clarification.
    Raphael Van Riel.
    Bioethics. January 06, 2016
    In order to do justice to the intuition that medical treatments as such do not form proper instances of bio‐enhancement, as the notion is employed in the ethical debate, we should construe bio‐enhancements as interventions, which do not aim at states that, other things being equal, ought to obtain. In the light of this clarification, we come to see that cases of moral enhancement are not covered by the notion of bio‐enhancement, properly construed.
    January 06, 2016   doi: 10.1111/bioe.12241   open full text
  • The Epistemology of Moral Bioenhancement.
    Parker Crutchfield.
    Bioethics. December 21, 2015
    Moral bioenhancement is the potential practice of manipulating individuals’ moral behaviors by biological means in order to help resolve pressing moral issues such as climate change and terrorism. This practice has obvious ethical implications, and these implications have been and continue to be discussed in the bioethics literature. What have not been discussed are the epistemological implications of moral bioenhancement. This article details some of these implications of engaging in moral bioenhancement. The argument begins by making the distinction between moral bioenhancement that manipulates the contents of mental states (e.g. beliefs) and that which manipulates other, non‐representational states (e.g. motivations). Either way, I argue, the enhanced moral psychology will fail to conform to epistemic norms, and the only way to resolve this failure and allow the moral bioenhancement to be effective in addressing the targeted moral issues is to make the moral bioenhancement covert.
    December 21, 2015   doi: 10.1111/bioe.12239   open full text
  • Voluntary Informed Consent in Paediatric Oncology Research.
    Sara A. S. Dekking, Rieke Van Der Graaf, Johannes J. M. Van Delden.
    Bioethics. December 21, 2015
    In paediatric oncology, research and treatments are often closely combined, which may compromise voluntary informed consent of parents. We identified two key scenarios in which voluntary informed consent for paediatric oncology studies is potentially compromised due to the intertwinement of research and care. The first scenario is inclusion by the treating paediatric oncologist, the second scenario concerns treatments confined to the research context. In this article we examine whether voluntary informed consent of parents for research is compromised in these two scenarios, and if so whether this is also morally problematic. For this, we employ the account of voluntary consent from Nelson and colleagues, who assert that voluntary consent requires substantial freedom from controlling influences. We argue that, in the absence of persuasion or manipulation, inclusion by the treating physician does not compromise voluntariness. However, it may function as a risk factor for controlling influence as it narrows the scope within which parents make decisions. Furthermore, physician appeal to reciprocity is not controlling as it constitutes persuasion. In addition, framing information is a form of informational manipulation and constitutes a controlling influence. In the second scenario, treatments confined to the research context qualify as controlling if the available options are restricted through manipulation of options. Although none of the influences is morally problematic in itself, a combination of influences may create morally problematic instances of involuntary informed consent. Therefore, safeguards should be implemented to establish an optimal environment for parents to provide voluntary informed consent in an integrated research‐care context.
    December 21, 2015   doi: 10.1111/bioe.12237   open full text
  • Conscientious Objection in Healthcare Provision: A New Dimension.
    Peter West‐Oram, Alena Buyx.
    Bioethics. December 10, 2015
    The right to conscientious objection in the provision of healthcare is the subject of a lengthy, heated and controversial debate. Recently, a new dimension was added to this debate by the US Supreme Court's decision in Burwell vs. Hobby Lobby et al. which effectively granted rights to freedom of conscience to private, for‐profit corporations. In light of this paradigm shift, we examine one of the most contentious points within this debate, the impact of granting conscience exemptions to healthcare providers on the ability of women to enjoy their rights to reproductive autonomy. We argue that the exemptions demanded by objecting healthcare providers cannot be justified on the liberal, pluralist grounds on which they are based, and impose unjustifiable costs on both individual persons, and society as a whole. In doing so, we draw attention to a worrying trend in healthcare policy in Europe and the United States to undermine women's rights to reproductive autonomy by prioritizing the rights of ideologically motivated service providers to an unjustifiably broad form of freedom of conscience.
    December 10, 2015   doi: 10.1111/bioe.12236   open full text
  • Fair Innings and Time‐Relative Claims.
    Ben Davies.
    Bioethics. December 10, 2015
    Greg Bognar has recently offered a prioritarian justification for ‘fair innings’ distributive principles that would ration access to healthcare on the basis of patients' age. In this article, I agree that Bognar's principle is among the strongest arguments for age‐based rationing. However, I argue that this position is incomplete because of the possibility of ‘time‐relative' egalitarian principles that could complement the kind of lifetime egalitarianism that Bognar adopts. After outlining Bognar's position, and explaining the attraction of time‐relative egalitarianism, I suggest various ways in which these two kinds of principle could interact. Since various options have very different implications for age‐based rationing, proponents of such a rationing scheme must take a position on time‐relative egalitarianism to complement a lifetime prioritarian view like Bognar's.
    December 10, 2015   doi: 10.1111/bioe.12234   open full text
  • Emergency Preservation and Resuscitation Trial: A Philosophical Justification for Non‐Voluntary Enrollment.
    Daniel Tigard.
    Bioethics. December 08, 2015
    In a current clinical trial for Emergency Preservation and Resuscitation (EPR), Dr. Samuel Tisherman of the University of Maryland aims to induce therapeutic hypothermia in order to ‘buy time’ for operating on victims of severe exsanguination. While recent publicity has framed this controversial procedure as ‘killing a patient to save his life’, the US Army and Acute Care Research appear to support the study on the grounds that such patients already face low chances of survival. Given that enrollment in the trial must be non‐voluntary, the study has received an exemption from federal standards for obtaining informed consent. How exactly, if at all, is non‐voluntary enrollment morally justifiable? In this essay, I appeal to the notable work of Hans Jonas in an effort to defend the EPR trial's use of non‐voluntary enrollment. It is often thought and, as I show, it may appear that Jonas has called for the end of experimental medical practice. Still, I derive from Jonas a principle of double‐effect upon which physicians may be seen as morally permitted to pursue innovations in emergency medicine but only as a byproduct of pursuing therapeutic success. With this position, I argue that the EPR trial can be granted a stronger philosophical justification than simply waiving the requirement of obtaining informed consent. The double‐effect justification would obtain, perhaps regardless of the success of such innovative procedures as therapeutic hypothermia.
    December 08, 2015   doi: 10.1111/bioe.12231   open full text
  • Integrative Bioethics: A Conceptually Inconsistent Project.
    Viktor Ivanković, Lovro Savić.
    Bioethics. December 08, 2015
    This article provides a critical evaluation of the central components of Integrative Bioethics, a project aiming at a bioethical framework reconceptualization. Its proponents claim that this new system of thought has developed a better bioethical methodology than mainstream Western bioethics, a claim that we criticize here. We deal especially with the buzz words of Integrative Bioethics – pluriperspectivism, integrativity, orientational knowledge, as well as with its underlying theory of moral truth. The first part of the paper looks at what the claims of a superior methodology consist in. The second reveals pluriperspectivism and integrativity to be underdeveloped, hazy terms, but which seem to be underpinned by two theses – the incommensurability and the inclusiveness theses. These theses we critically scrutinize. We then consider strategies the project's proponents might apply to curb these theses in order to acquire minimal consistency for their framework. This part of the article also deals with the conception of moral truth that drives the theory, a position equally burdened with inconsistencies. In the last part of the article, we observe the concept of orientational knowledge, and develop two interpretations of its possible meaning. We claim that, following the first interpretation, Integrative Bioethics is completely descriptive, in which case it is informative and important, but hardly bioethics; if it is normative, following the second interpretation, it is bioethics as we already know it, but merely clad in rhetorical embellishments. We conclude that there is nothing new about this project, and that its inconsistencies are reason enough for its abandonment.
    December 08, 2015   doi: 10.1111/bioe.12235   open full text
  • A Personalist Ontological Approach to Synthetic Biology.
    Lucía Gómez‐Tatay, José Miguel Hernández‐Andreu, Justo Aznar.
    Bioethics. December 08, 2015
    Although synthetic biology is a promising discipline, it also raises serious ethical questions that must be addressed in order to prevent unwanted consequences and to ensure that its progress leads toward the good of all. Questions arise about the role of this discipline in a possible redefinition of the concept of life and its creation. With regard to the products of synthetic biology, the moral status that they should be given as well as the ethically correct way to behave towards them are not clear. Moreover, risks that could result from a misuse of this technology or from an accidental release of synthetic organisms into the environment cannot be ignored; concerns about biosecurity and biosafety appear. Here we discuss these and other questions from a personalist ontological framework, which defends human life as an essential value and proposes a set of principles to ensure the safeguarding of this and other values that are based on it.
    December 08, 2015   doi: 10.1111/bioe.12230   open full text
  • The Ties that Undermine.
    John Beverley.
    Bioethics. October 12, 2015
    Do biological relations ground responsibilities between biological fathers and their offspring? Few think biological relations ground either necessary or sufficient conditions for responsibility. Nevertheless, many think biological relations ground responsibility at least partially. Various scenarios, such as cases concerning the responsibilities of sperm donors, have been used to argue in favor of biological relations as partially grounding responsibilities. In this article, I seek to undermine the temptation to explain sperm donor scenarios via biological relations by appealing to an overlooked feature of such scenarios. More specifically, I argue that sperm donor scenarios may be better explained by considering the unique abilities of agents involved. Appealing to unique ability does not eliminate the possibility of biological relations providing some explanation for perceived responsibilities on the part of biological fathers. However, since it is unclear exactly why biological relations are supposed to ground responsibility in the first place, and rather clear why unique ability grounds responsibility in those scenarios where it is exhibited, the burden of proof seems shifted to those advocating biological relations as grounds of responsibility to provide an explanation. Since this seems unlikely, I conclude it is best to avoid appealing to biological relations as providing grounds for responsibility.
    October 12, 2015   doi: 10.1111/bioe.12213   open full text
  • Medical Researchers' Ancillary Care Obligations: The Relationship‐Based Approach.
    Nate W. Olson.
    Bioethics. September 30, 2015
    In this article, I provide a new account of the basis of medical researchers' ancillary care obligations. Ancillary care in medical research, or medical care that research participants need but that is not required for the validity or safety of a study or to redress research injuries, is a topic that has drawn increasing attention in research ethics over the last ten years. My view, the relationship‐based approach, improves on the main existing theory, Richardson and Belsky's ‘partial‐entrustment model’, by avoiding its problematic restriction on the scope of health needs for which researchers could be obligated to provide ancillary care. Instead, it grounds ancillary care obligations in a wide range of morally relevant features of the researcher‐participant relationship, including the level of engagement between researchers and participants, and weighs these factors against each other. I argue that the level of engagement, that is, the duration and intensity of interactions, between researchers and participants matters for ancillary care because of its connection to the meaningfulness of a relationship, and I suggest that other morally relevant features can be grounded in researchers' role obligations.
    September 30, 2015   doi: 10.1111/bioe.12212   open full text
  • The Viable Violinist.
    Michael Hawking.
    Bioethics. September 30, 2015
    In the aftermath of the Kermit Gosnell trial and Giubilini and Minerva's article ‘After‐birth abortion’, abortion‐rights advocates have been pressured to provide an account of the moral difference between abortion, particularly late‐term abortion, and infanticide. In response, some scholars have defended a moral distinction by appealing to an argument developed by Judith Jarvis Thomson in A defense of abortion. However, once Thomson's analogy is refined to account for the morally relevant features of late‐term pregnancy, rather than distinguishing between late‐term abortion and infanticide, it reinforces their moral similarity. This is because late‐term abortion requires more than detachment – it requires an act of feticide to ensure the death of the viable fetus. As such, a Thomsonian account cannot be deployed successfully as a response to Giubilini and Minerva. Those wishing to defend late‐term abortion while rejecting the permissibility of infanticide will need to provide an alternative account of the difference, or else accept Giubilini and Minerva's conclusion.
    September 30, 2015   doi: 10.1111/bioe.12206   open full text
  • Trust and the Duty of Organ Donation.
    Ben Almassi.
    Bioethics. April 15, 2014
    Several recent publications in biomedical ethics argue that organ donation is generally morally obligatory and failure to do so is morally indefensible. Arguments for this moral conclusion tend to be of two kinds: arguments from fairness and arguments from easy rescue. While I agree that many of us have a duty to donate, in this article I criticize these arguments for a general duty of organ donation and their application to organ procurement policy. My concern is that these arguments neglect the role that trust plays in contemporary organ transplant policies and in differential rational attitudes toward donation. Recognizing donation as an achievement of trust, and acknowledging the warrant of many people's rational distrust or withheld trust in medicine, I argue, should have significant implications for the ethics of organ procurement.
    April 15, 2014   doi: 10.1111/bioe.12096   open full text
  • The Responsibility Objection to Abortion: Rejecting the Notion that the Responsibility Objection Successfully Refutes a Woman's Right to Choose.
    Ian McDaniel.
    Bioethics. April 10, 2014
    This article considers the objection to abortion that a woman who voluntarily engages in sexual activity is responsible for her fetus and so cannot have an abortion. The conclusion argued for is that the conceptions of responsibility that can ground the objection that are considered do not necessitate a requirement on the part of a pregnant woman to carry her pregnancy to term. Thus, the iterations of the responsibility objection presented cannot be used to curtail reproductive choice.
    April 10, 2014   doi: 10.1111/bioe.12097   open full text
  • Stocking the Genetic Supermarket: Reproductive Genetic Technologies and Collective Action Problems.
    Chris Gyngell, Thomas Douglas.
    Bioethics. April 10, 2014
    Reproductive genetic technologies (RGTs) allow parents to decide whether their future children will have or lack certain genetic predispositions. A popular model that has been proposed for regulating access to RGTs is the ‘genetic supermarket’. In the genetic supermarket, parents are free to make decisions about which genes to select for their children with little state interference. One possible consequence of the genetic supermarket is that collective action problems will arise: if rational individuals use the genetic supermarket in isolation from one another, this may have a negative effect on society as a whole, including future generations. In this article we argue that RGTs targeting height, innate immunity, and certain cognitive traits could lead to collective action problems. We then discuss whether this risk could in principle justify state intervention in the genetic supermarket. We argue that there is a plausible prima facie case for the view that such state intervention would be justified and respond to a number of arguments that might be adduced against that view.
    April 10, 2014   doi: 10.1111/bioe.12098   open full text
  • Why and How to Compensate Living Organ Donors: Ethical Implications of the New Australian Scheme.
    Alberto Giubilini.
    Bioethics. March 24, 2014
    The Australian Federal Government has announced a two‐year trial scheme to compensate living organ donors. The compensation will be the equivalent of six weeks paid leave at the rate of the national minimum wage. In this article I analyse the ethics of compensating living organ donors taking the Australian scheme as a reference point. Considering the long waiting lists for organ transplantations and the related costs on the healthcare system of treating patients waiting for an organ, the 1.3 million AUD the Australian Government has committed might represent a very worthwhile investment. I argue that a scheme like the Australian one is sufficiently well designed to avoid all the ethical problems traditionally associated with attaching a monetary value to the human body or to parts of it, namely commodification, inducement, exploitation, and equality issues. Therefore, I suggest that the Australian scheme, if cost‐effective, should represent a model for other countries to follow. Nonetheless, although I endorse this scheme, I will also argue that this kind of scheme raises issues of justice in regard to the distribution of organs. Thus, I propose that other policies would be needed to supplement the scheme in order to guarantee not only a higher number of organs available, but also a fair distribution.
    March 24, 2014   doi: 10.1111/bioe.12088   open full text
  • The Harm of Bioethics: A Critique of Singer and Callahan on Obesity.
    Christopher Mayes.
    Bioethics. March 24, 2014
    Debate concerning the social impact of obesity has been ongoing since at least the 1980s. Bioethicists, however, have been relatively silent. If obesity is addressed it tends to be in the context of resource allocation or clinical procedures such as bariatric surgery. However, prominent bioethicists Peter Singer and Dan Callahan have recently entered the obesity debate to argue that obesity is not simply a clinical or personal issue but an ethical issue with social and political consequences. This article critically examines two problematic aspects of Singer and Callahan's respective approaches. First, there is an uncritical assumption that individuals are autonomous agents responsible for health‐related effects associated with food choices. In their view, individuals are obese because they choose certain foods or refrain from physical activity. However, this view alone does not justify intervention. Both Singer and Callahan recognize that individuals are free to make foolish choices so long as they do not harm others. It is at this point that the second problematic aspect arises. To interfere legitimately in the liberty of individuals, they invoke the harm principle. I contend, however, that in making this move both Singer and Callahan rely on superficial readings of public health research to amplify the harm caused by obese individuals and ignore pertinent epidemiological research on the social determinants of obesity. I argue that the mobilization of the harm principle and corresponding focus on individual behaviours without careful consideration of the empirical research is itself a form of harm that needs to be taken seriously.
    March 24, 2014   doi: 10.1111/bioe.12089   open full text
  • Conceptual and Practical Problems of Moral Enhancement.
    Birgit Beck.
    Bioethics. March 24, 2014
    Recently, the debate on human enhancement has shifted from familiar topics like cognitive enhancement and mood enhancement to a new and – to no one's surprise – controversial subject, namely moral enhancement. Some proponents from the transhumanist camp allude to the ‘urgent need’ of improving the moral conduct of humankind in the face of ever growing technological progress and the substantial dangers entailed in this enterprise. Other thinkers express more sceptical views about this proposal. As the debate has revealed so far, there is no shared opinion among philosophers (or scientists) about the meaning, prospects, and ethical evaluation of moral enhancement. In this article I will address several conceptual and practical problems of this issue, in order to encourage discussion about the prospects of (thinking about) moral enhancement in the future. My assumption is that (i) for the short term, there is little chance of arriving at an agreement on the proper understanding of morality and the appropriateness of one single (meta‐)ethical theory; (ii) apart from this, there are further philosophical puzzles loosely referred to in the debate which add to theoretical confusion; and (iii) even if these conceptual problems could be solved, there are still practical problems to be smoothed out if moral enhancement is ever to gain relevance apart from merely theoretical interest. My tentative conclusion, therefore, will be that moral enhancement is not very likely to be made sense of – let alone realized – in the medium‐term future.
    March 24, 2014   doi: 10.1111/bioe.12090   open full text
  • Altruism and Reward: Motivational Compatibility in Deceased Organ Donation.
    Teck Chuan Voo.
    Bioethics. February 19, 2014
    Acts of helping others are often based on mixed motivations. Based on this claim, it has been argued that the use of a financial reward to incentivize organ donation is compatible with promoting altruism in organ donation. In its report Human Bodies: Donation for Medicine and Research, the Nuffield Council on Bioethics uses this argument to justify its suggestion to pilot a funeral payment scheme to incentivize people to register for deceased organ donation in the UK. In this article, I cast a sceptical eye on the above Nuffield report's argument that its proposed funeral payment scheme would prompt deceased organ donations that remain altruistic (as defined by and valued the report). Specifically, I illustrate how this scheme may prompt various forms of mixed motivations which would not satisfy the report's definition of altruism. Insofar as the scheme produces an expectation of the reward, it stands diametrical to promoting an ‘altruistic perspective’. My minimal goal in this article is to argue that altruism is not motivationally compatible with reward as an incentive for donation. My broader goal is to argue that if a financial reward is used to incentivize organ donation, then we should recognize that the donation system is no longer aiming to promote altruism. Rewarded donation would not be altruistic but it may be ethical given a persistent organ shortage situation.
    February 19, 2014   doi: 10.1111/bioe.12078   open full text
  • Human Rights Reasoning and Medical Law: A Sceptical Essay.
    Jesse Wall.
    Bioethics. February 19, 2014
    I am sceptical as to the contribution that human rights can make to our evaluation of medical law. I will argue here that viewing medical law through a human rights framework provides no greater clarity, insight or focus. If anything, human rights reasoning clouds any bioethical or evaluative analysis. In Section 1 of this article, I outline the general structure of human rights reasoning. I will describe human rights reasoning as (a) reasoning from rights that each person has ‘by virtue of their humanity’, (b) reasoning from rights that provide ‘hard to defeat’ reasons for action and (c) reasoning from abstract norms to specified duties. I will then argue in Section 2 that, unless we (a) re‐conceive of human rights as narrow categories of liberties, it becomes (b) necessary for our human rights reasoning to gauge the normative force of each claim or liberty. When we apply this approach to disputes in medical law, we (in the best case scenario) end up (c) ‘looking straight through’ the human right to the (disagreement about) values and features that each person has by virtue of their humanity.
    February 19, 2014   doi: 10.1111/bioe.12083   open full text
  • Ethical Considerations for Outcome‐adaptive Trial Designs: A Clinical Researcher's Perspective.
    Scott Brian Saxman.
    Bioethics. February 19, 2014
    In a typical comparative clinical trial the randomization scheme is fixed at the beginning of the study, and maintained throughout the course of the trial. A number of researchers have championed a randomized trial design referred to as ‘outcome‐adaptive randomization.’ In this type of trial, the likelihood of a patient being enrolled to a particular arm of the study increases or decreases as preliminary information becomes available suggesting that treatment may be superior or inferior. While the design merits of outcome‐adaptive trials have been debated, little attention has been paid to significant ethical concerns that arise in the conduct of such studies. These include loss of equipoise, lack of processes for adequate informed consent, and inequalities inherent in the research design which could lead to perceptions of injustice that may have negative implications for patients and the research enterprise. This article examines the ethical difficulties inherent in outcome‐adaptive trials.
    February 19, 2014   doi: 10.1111/bioe.12084   open full text
  • Understanding the Fluid Nature of Personhood – the Ring Theory of Personhood.
    Lalit Kumar Radha Krishna, Rayan Alsuwaigh.
    Bioethics. February 19, 2014
    Familial determination, replete with its frequent usurping of patient autonomy, propagation of collusion, and circumnavigation of direct patient involvement in their own care deliberations, continues to impact clinical practice in many Asian nations. Suggestions that underpinning this practice, in Confucian‐inspired societies, is the adherence of the populace to the familial centric ideas of personhood espoused by Confucian ethics, provide a novel means of understanding and improving patient‐centred care at the end of life. Clinical experience in Confucian‐inspired Singapore, however, suggests that personhood is conceived in broader terms. This diverging view inspired a study of local conceptions of personhood and scrutiny of the influence of the family upon it. From the data gathered, a culturally appropriate, clinically relevant and ethically sensitive concept of personhood was proposed: the Ring Theory of Personhood (Ring Theory) that better captures the nuances of local conceptions of personhood. The Ring Theory highlights the fact that, far from being solely dependent upon familial centric ideals, local conceptions of personhood are dynamic, context dependent, evolving ideas delineated by four dimensions. Using the Ring Theory, the nature of familial influences upon the four dimensions of personhood – the Innate, Individual, Relational and Societal – are examined to reveal that, contrary to perceived knowledge, conceptions of personhood within Confucian societies are not the prime reason for the continued presence of this decision‐making model but remain present within local thinking and practices as a sociocultural residue and primarily because of inertia in updating ideas.
    February 19, 2014   doi: 10.1111/bioe.12085   open full text
  • Transitional Paternalism: How Shared Normative Powers Give Rise to the Asymmetry of Adolescent Consent and Refusal.
    Neil C. Manson.
    Bioethics. February 19, 2014
    In many jurisdictions, adolescents acquire the right to consent to treatment; but in some cases their refusals – e.g. of life‐saving treatment – may not be respected. This asymmetry of adolescent consent and refusal seems puzzling, even incoherent. The aim here is to offer an original explanation, and a justification, of this asymmetry. Rather than trying to explain the asymmetry in terms of a variable standard of competence – where the adolescent is competent to consent to, but not refuse, certain interventions – the account offered here focuses more closely on the normative power to render actions permissible. Where normative powers are shared they can readily give rise to an asymmetry between consent and refusal. We then turn to why it is justifiable that normative powers be shared in adolescence. Transitional paternalism holds that the acquisition of normative powers by competent adolescents should not be an instant one, achieved in a single step, but that there should be a transitional period where paternalistic protection is rolled back, but not entirely withdrawn until a later date. Transitional paternalism could be implemented without generating the asymmetry between consent and refusal but, it is argued, the asymmetric version of transitional paternalism is to be preferred insofar as it offers a greater respect for the adolescent's decisions than the symmetrical alternative.
    February 19, 2014   doi: 10.1111/bioe.12086   open full text
  • Autonomy, Natality and Freedom: A Liberal Re‐examination of Habermas in the Enhancement Debate.
    Jonathan Pugh.
    Bioethics. February 19, 2014
    Jurgen Habermas has argued that carrying out pre‐natal germline enhancements would be inimical to the future child's autonomy. In this article, I suggest that many of the objections that have been made against Habermas' arguments by liberals in the enhancement debate misconstrue his claims. To explain why, I begin by explaining how Habermas' view of personal autonomy confers particular importance to the agent's embodiment and social environment. In view of this, I explain that it is possible to draw two arguments against germline enhancements from Habermas' thought. I call these arguments ‘the argument from negative freedom’ and ‘the argument from natality’. Although I argue that many of the common liberal objections to Habermas are not applicable when his arguments are properly understood, I go on to suggest ways in which supporters of enhancement might appropriately respond to Habermas' arguments.
    February 19, 2014   doi: 10.1111/bioe.12082   open full text
  • An Update to Returning Genetic Research Results to Individuals: Perspectives of the Industry Pharmacogenomics Working Group.
    Sandra K. Prucka, Lester J. Arnold, John E. Brandt, Sandra Gilardi, Lea C. Harty, Feng Hong, Joanne Malia, David J. Pulford.
    Bioethics. January 29, 2014
    The ease with which genotyping technologies generate tremendous amounts of data on research participants has been well chronicled, a feat that continues to become both faster and cheaper to perform. In parallel to these advances come additional ethical considerations and debates, one of which centers on providing individual research results and incidental findings back to research participants taking part in genetic research efforts. In 2006 the Industry Pharmacogenomics Working Group (I‐PWG) offered some ‘Points‐to‐Consider’ on this topic within the context of the drug development process from those who are affiliated to pharmaceutical companies. Today many of these points remain applicable to the discussion but will be expanded upon in this updated viewpoint from the I‐PWG. The exploratory nature of pharmacogenomic work in the pharmaceutical industry is discussed to provide context for why these results typically are not best suited for return. Operational challenges unique to this industry which cause barriers to returning this information are also explained.
    January 29, 2014   doi: 10.1111/bioe.12073   open full text
  • Bisphenol A and Risk Management Ethics.
    David B. Resnik, Kevin C. Elliott.
    Bioethics. January 29, 2014
    It is widely recognized that endocrine disrupting compounds, such as Bisphenol A, pose challenges for traditional paradigms in toxicology, insofar as these substances appear to have a wider range of low‐dose effects than previously recognized. These compounds also pose challenges for ethics and policymaking. When a chemical does not have significant low‐dose effects, regulators can allow it to be introduced into commerce or the environment, provided that procedures and rules are in place to keep exposures below an acceptable level. This option allows society to maximize the benefits from the use of the chemical while minimizing risks to human health or the environment, and it represents a compromise between competing values. When it is not possible to establish acceptable exposure levels for chemicals that pose significant health or environmental risks, the most reasonable options for risk management may be to enact either partial or complete bans on their use. These options create greater moral conflict than other risk management strategies, leaving policymakers difficult choices between competing values.
    January 29, 2014   doi: 10.1111/bioe.12079   open full text
  • On Cognitive and Moral Enhancement: A Reply to Savulescu and Persson.
    J. Adam Carter, Emma C. Gordon.
    Bioethics. December 23, 2013
    In a series of recent works, Julian Savulescu and Ingmar Persson insist that, given the ease by which irreversible destruction is achievable by a morally wicked minority, (i) strictly cognitive bio‐enhancement is currently too risky, while (ii) moral bio‐enhancement is plausibly morally mandatory (and urgently so). This article aims to show that the proposal Savulescu and Persson advance relies on several problematic assumptions about the separability of cognitive and moral enhancement as distinct aims. Specifically, we propose that the underpinnings of Savulescu's and Persson's normative argument unravel once it is suitably clear how aiming to cognitively enhance an individual will in part require that one aim to bring about certain moral goods we show to be essential to cognitive flourishing; conversely, aiming to bring about moral enhancement in an individual must involve aiming to improve certain cognitive capacities we show to be essential to moral flourishing. After developing these points in some detail, and their implication for Savulescu's & Persson's proposal, we conclude by outlining some positive suggestions.
    December 23, 2013   doi: 10.1111/bioe.12076   open full text
  • German law on circumcision and its debate: How an ethical and legal issue turned political.
    Diana Aurenque, Urban Wiesing.
    Bioethics. December 23, 2013
    The article aims to illuminate the recent debate in Germany about the legitimacy of circumcision for religious reasons. The aim is both to evaluate the new German law allowing religious circumcision, and to outline the resulting conflict between the surrounding ethical and legal issues. We first elucidate the diversity of legal and medical views on religious circumcision in Germany. Next we examine to what extent invasive and irreversible physical interventions on infant boys unable to given their consent should be carried out for non‐medical reasons. To this end, the potential benefits and harms of circumcision for non‐medical reasons are compared. We argue that circumcision does not provide any benefits for the ‘child as a child’ and poses only risks to boys. We then set out to clarify and analyse political (rather than ethical) justifications of the new circumcision law. We demonstrate through this analysis how the circumcision debate in Germany has been transformed from a legal and ethical problem into a political issue, due at least in part to Germany's unique historical context. Although such a particular political sensibility is entirely comprehensible, it raises particular problems when it comes to framing and responding to medical ethical issues – as in the case of religious circumcision.
    December 23, 2013   doi: 10.1111/bioe.12077   open full text
  • A Critique Of Rob Lovering'S Criticism Of The Substance View.
    Henrik Friberg‐Fernros.
    Bioethics. December 23, 2013
    In his article, The Substance View: a critique, Rob Lovering argues that the substance view – according to which the human embryo is a person entitled to human rights – leads to such implausible implications that this view should be abandoned. In this article I respond to his criticism by arguing that either his arguments fail because the proponents of the substance view are not obligated to hold positions which may be considered absurd, or because the positions which they are assumed to be obligated to hold, are not absurd at all.
    December 23, 2013   doi: 10.1111/bioe.12080   open full text
  • Acting to Let Someone Die.
    Andrew McGee.
    Bioethics. December 10, 2013
    This paper examines the recent prominent view in medical ethics that withdrawing life‐sustaining treatment (LST) is an act of killing. I trace this view to the rejection of the traditional claim that withdrawing LST is an omission rather than an act. Although that traditional claim is not as problematic as this recent prominent view suggests, my main claim is that even if we accepted that withdrawing LST should be classified as an act rather than as an omission, it could still be classified as letting die rather than killing. Even though omissions are contrasted with acts, letting die need not be, for one can let die by means of acts. The remainder of the paper is devoted to establishing this claim and addresses certain objections to it.
    December 10, 2013   doi: 10.1111/bioe.12072   open full text
  • Reciprocity‐Based Reasons for Benefiting Research Participants: MOST FAIL, the Most Plausible is Problematic.
    Neema Sofaer.
    Bioethics. December 06, 2013
    A common reason for giving research participants post‐trial access (PTA) to the trial intervention appeals to reciprocity, the principle, stated most generally, that if one person benefits a second, the second should reciprocate: benefit the first in return. Many authors consider it obvious that reciprocity supports PTA. Yet their reciprocity principles differ, with many authors apparently unaware of alternative versions. This article is the first to gather the range of reciprocity principles. It finds that: (1) most are false. (2) The most plausible principle, which is also problematic, applies only when participants experience significant net risks or burdens. (3) Seldom does reciprocity support PTA for participants or give researchers stronger reason to benefit participants than equally needy non‐participants. (4) Reciprocity fails to explain the common view that it is bad when participants in a successful trial have benefited from the trial intervention but lack PTA to it.
    December 06, 2013   doi: 10.1111/bioe.12039   open full text
  • Assisted Reproduction and Distributive Justice.
    Vida Panitch.
    Bioethics. November 08, 2013
    The Canadian province of Quebec recently amended its Health Insurance Act to cover the costs of In Vitro Fertilization (IVF). The province of Ontario recently de‐insured IVF. Both provinces cited cost‐effectiveness as their grounds, but the question as to whether a public health insurance system ought to cover IVF raises the deeper question of how we should understand reproduction at the social level, and whether its costs should be a matter of individual or collective responsibility. In this article I examine three strategies for justifying collective provisions in a liberal society and assess whether public reproductive assistance can be defended on any of these accounts. I begin by considering, and rejecting, rights‐based and needs‐based approaches. I go on to argue that instead we ought to address assisted reproduction from the perspective of the contractarian insurance‐based model for public health coverage, according to which we select items for inclusion based on their unpredictability in nature and cost. I argue that infertility qualifies as an unpredictable incident against which rational agents would choose to insure under ideal conditions and that assisted reproduction is thereby a matter of collective responsibility, but only in cases of medical necessity or inability to pay. The policy I endorse by appeal to this approach is a means‐tested system of coverage resembling neither Ontario nor Quebec's, and I conclude that it constitutes a promising alternative worthy of serious consideration by bioethicists, political philosophers, and policy‐makers alike.
    November 08, 2013   doi: 10.1111/bioe.12067   open full text
  • Policy on Synthetic Biology: Deliberation, Probability, and the Precautionary Paradox.
    Christopher Wareham, Cecilia Nardini.
    Bioethics. November 08, 2013
    Synthetic biology is a cutting‐edge area of research that holds the promise of unprecedented health benefits. However, in tandem with these large prospective benefits, synthetic biology projects entail a risk of catastrophic consequences whose severity may exceed that of most ordinary human undertakings. This is due to the peculiar nature of synthetic biology as a ‘threshold technology’ which opens doors to opportunities and applications that are essentially unpredictable. Fears about these potentially unstoppable consequences have led to declarations from civil society groups calling for the use of a precautionary principle to regulate the field. Moreover, the principle is prevalent in law and international agreements. Despite widespread political recognition of a need for caution, the precautionary principle has been extensively criticized as a guide for regulatory policy. We examine a central objection to the principle: that its application entails crippling inaction and incoherence, since whatever action one takes there is always a chance that some highly improbable cataclysm will occur. In response to this difficulty, which we call the ‘precautionary paradox,’ we outline a deliberative means for arriving at threshold of probability below which potential dangers can be disregarded. In addition, we describe a Bayesian mechanism with which to assign probabilities to harmful outcomes. We argue that these steps resolve the paradox. The rehabilitated PP can thus provide a viable policy option to confront the uncharted waters of synthetic biology research.
    November 08, 2013   doi: 10.1111/bioe.12068   open full text
  • Normal Human Variation: Refocussing the Enhancement Debate.
    Guy Kahane, Julian Savulescu.
    Bioethics. August 02, 2013
    This article draws attention to several common mistakes in thinking about biomedical enhancement, mistakes that are made even by some supporters of enhancement. We illustrate these mistakes by examining objections that John Harris has recently raised against the use of pharmacological interventions to directly modulate moral decision‐making. We then apply these lessons to other influential figures in the debate about enhancement. One upshot of our argument is that many considerations presented as powerful objections to enhancement are really strong considerations in favour of biomedical enhancement, just in a different direction. Another upshot is that it is unfortunate that much of the current debate focuses on interventions that will radically transform normal human capacities. Such interventions are unlikely to be available in the near future, and may not even be feasible. But our argument shows that the enhancement project can still have a radical impact on human life even if biomedical enhancement operated entirely within the normal human range.
    August 02, 2013   doi: 10.1111/bioe.12045   open full text
  • Rituals of Infant Death: Defining Life and Islamic Personhood.
    Alison Shaw.
    Bioethics. August 02, 2013
    This article is about the recognition of personhood when death occurs in early life. Drawing from anthropological perspectives on personhood at the beginnings and ends of life, it examines the implications of competing religious and customary definitions of personhood for a small sample of young British Pakistani Muslim women who experienced miscarriage and stillbirth. It suggests that these women's concerns about the lack of recognition given to the personhood of their fetus or baby constitute a challenge to customary practices surrounding burial as a Muslim. The article suggests that these women's concerns cannot be adequately glossed as a clash of Islamic belief versus Western medicine. Rather, they represent a renegotiation of Islamic opinion and customary practices within the broader context of changes in the medical and social norms surrounding pregnancy loss and infant death in multi‐ethnic British society.
    August 02, 2013   doi: 10.1111/bioe.12047   open full text
  • Pre‐modern Islamic Medical Ethics and Graeco‐Islamic‐Jewish Embryology.
    Mohammed Ghaly.
    Bioethics. July 11, 2013
    This article examines the, hitherto comparatively unexplored, reception of Greek embryology by medieval Muslim jurists. The article elaborates on the views attributed to Hippocrates (d. ca. 375 BC), which received attention from both Muslim physicians, such as Avicenna (d. 1037), and their Jewish peers living in the Muslim world including Ibn Jumayʽ (d. ca. 1198) and Moses Maimonides (d. 1204). The religio‐ethical implications of these Graeco‐Islamic‐Jewish embryological views were fathomed out by the two medieval Muslim jurists Shihāb al‐Dīn al‐Qarāfī (d. 1285) and Ibn al‐Qayyim (d. 1350). By putting these medieval religio‐ethical discussions into the limelight, the article aims to argue for a two‐pronged thesis. Firstly, pre‐modern medical ethics did exist in the Islamic tradition and available evidence shows that this field had a multidisciplinary character where the Islamic scriptures and the Graeco‐Islamic‐Jewish medical legacy were highly intertwined. This information problematizes the postulate claiming that medieval Muslim jurists were hostile to the so‐called ‘ancient sciences’. Secondly, these medieval religio‐ethical discussions remain playing a significant role in shaping the nascent field of contemporary Islamic bioethics. However, examining the exact character and scope of this role still requires further academic ventures.
    July 11, 2013   doi: 10.1111/bioe.12038   open full text
  • Splitting the Difference? Principled Compromise and Assisted Dying.
    Richard Huxtable.
    Bioethics. July 11, 2013
    Compromise on moral matters attracts ambivalent reactions, since it seems at once laudable and deplorable. When a hotly‐contested phenomenon like assisted dying is debated, all‐or‐nothing positions tend to be advanced, with little thought given to the desirability of, or prospects for, compromise. In response to recent articles by Søren Holm and Alex Mullock, in this article I argue that principled compromise can be encouraged even in relation to this phenomenon, provided that certain conditions are present (which I suggest they are). In order to qualify as appropriately principled, the ensuing negotiations require disputants to observe three constraints: they should be suitably reflective, reliable and respectful in their dealings with one another. The product that will result from such a process will also need to split the difference between the warring parties. In assisted dying, I argue that a reduced offence of ‘compassionate killing’ can achieve this. I acknowledge, however, that splitting the difference can induce splitting headaches, as there remain certain questions to be answered. Hopefully, however, sufficient work is done here to defend attempts to occupy the middle ground, whether these relate to assisted dying specifically or to other disputed moral matters.
    July 11, 2013   doi: 10.1111/bioe.12041   open full text
  • Ethical Review of Research on Human Subjects at Unilever: Reflections on Governance.
    Mark Sheehan, Vernon Marti, Tony Roberts.
    Bioethics. July 10, 2013
    This article considers the process of ethical review of research on human subjects at a very large multinational consumer products company. The commercial context of this research throws up unique challenges and opportunities that make the ethics of the process of oversight distinct from mainstream medical research. Reflection on the justification of governance processes sheds important, contrasting light on the ethics of governance of other forms and context of research.
    July 10, 2013   doi: 10.1111/bioe.12040   open full text
  • When Intuition is Not Enough. Why the Principle of Procreative Beneficence Must Work Much Harder to Justify Its Eugenic Vision.
    Rebecca Bennett.
    Bioethics. July 10, 2013
    The Principle of Procreative Beneficence (PPB) claims that we have a moral obligation, where choice is possible, to choose to create the best child we can. The existence of this moral obligation has been proposed by John Harris and Julian Savulescu and has proved controversial on many levels, not least that it is eugenics, asking us to produce the best children we can, not for the sake of that child's welfare, but in order to make a better society. These are strong claims that require robust justification that can be open to scrutiny and debate. This article argues that robust justifications are currently lacking in the work of Savulescu and Harris. The justifications provided for their conclusions about this obligation to have the best child possible rely heavily on Derek Parfit's Non‐Identity Problem and the intuitive response this provokes in many of us. Unfortunately Harris and Savulescu do not embrace the entirety of the Non‐Identity Problem and the puzzle that it presents. The Non‐Identity Problem actually provides a refutation of PPB. In order to establish PPB as a credible and defendable principle, Harris and Savulescu need to find what has eluded Parfit and many others: a solution to the Non‐Identity Problem and thus an overturning of the refutation it provides for PPB. While Harris and Savulescu do hint at possible but highly problematic solutions to the Non‐Identity Problem, these are not developed or defended. As a result their controversial is left supported by little more than intuition.
    July 10, 2013   doi: 10.1111/bioe.12044   open full text
  • Exposure Ethics: Does Hiv Pre‐Exposure Prophylaxis Raise Ethical Problems for the Health Care Provider and Policy Maker?
    Francois Venter, Lucy Allais, Marlise Richter.
    Bioethics. June 24, 2013
    The last few years have seen dramatic progress in the development of HIV pre‐exposure prophylaxis (PrEP). These developments have been met by ethical concerns. HIV interventions are often thought to be ethically difficult. In a context which includes disagreements over human rights, controversies over testing policies, and questions about sexual morality and individual responsibility, PrEP has been seen as an ethically complex intervention. We argue that this is mistaken, and that in fact, PrEP does not raise new ethical concerns. Some of the questions posed by PrEP are not specific to HIV prophylaxis, but simply standard public health considerations about resource allocation and striking a balance between individual benefit and public good. We consider sexual disinhibition in the context of private prescriptions, and conclude that only unjustified AIDS‐exceptionalism or inappropriate moralism about sex supports thinking that PrEP raises new ethical problems. This negative conclusion is significant in a context where supposed ethical concerns about PrEP have been raised, and in the context of HIV exceptionalism.
    June 24, 2013   doi: 10.1111/bioe.12021   open full text
  • Reasonability and Conscientious Objection in Medicine: A Reply to Marsh and an Elaboration of the Reason‐Giving Requirement.
    Robert F. Card.
    Bioethics. June 24, 2013
    In this paper I defend the Reasonability View: the position that medical professionals seeking a conscientious exemption must state reasons in support of their objection and allow those reasons to be subject to evaluation. Recently, this view has been criticized by Jason Marsh as proposing a standard that is either too difficult to meet or too easy to satisfy. First, I defend the Reasonability View from this proposed dilemma. Then, I develop this view by presenting and explaining some of the central criteria it uses to assess whether a conscientious objection is proper grounds for extending an exemption to a medical practitioner.
    June 24, 2013   doi: 10.1111/bioe.12022   open full text
  • Bioethics Methods in the Ethical, Legal, and Social Implications of the Human Genome Project Literature.
    Rebecca L. Walker, Clair Morrissey.
    Bioethics. June 24, 2013
    While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications (ELSI) of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross‐disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample of ELSI publications appearing between 2003 and 2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries (such as social, legal, or political investigations).
    June 24, 2013   doi: 10.1111/bioe.12023   open full text
  • Stigmatization and Denormalization as Public Health Policies: Some Kantian Thoughts.
    Richard Dean.
    Bioethics. April 16, 2013
    The stigmatization of some groups of people, whether for some characteristic they possess or some behavior they engage in, will initially strike most of us as wrong. For many years, academic work in public health, which focused mainly on the stigmatization of HIV‐positive individuals, reinforced this natural reaction to stigmatization, by pointing out the negative health effects of stigmatization. But more recently, the apparent success of anti‐smoking campaigns which employ stigmatization of smokers has raised questions about whether stigmatization may sometimes be justified, because of its positive effects on public health. Discussion of the issue so far has focused on consequences, and on some Kantian considerations regarding the status of the stigmatized. In this article, I argue that further Kantian considerations regarding the treatment of the general public (the potential stigmatizers) also count against any public health policy involving stigmatization. Attempts to encourage stigmatization are likely to fail to appeal to the rational decision‐making abilities of the general public, and the creation of stigmatized groups (even if they are stigmatized for their voluntary behavior) is an obstacle to the self‐improvement of members of the general public.
    April 16, 2013   doi: 10.1111/bioe.12019   open full text
  • Absolute Biological Needs.
    Stephen McLeod.
    Bioethics. April 16, 2013
    Absolute needs (as against instrumental needs) are independent of the ends, goals and purposes of personal agents. Against the view that the only needs are instrumental needs, David Wiggins and Garrett Thomson have defended absolute needs on the grounds that the verb ‘need’ has instrumental and absolute senses. While remaining neutral about it, this article does not adopt that approach. Instead, it suggests that there are absolute biological needs. The absolute nature of these needs is defended by appeal to: their objectivity (as against mind‐dependence); the universality of the phenomenon of needing across the plant and animal kingdoms; the impossibility that biological needs depend wholly upon the exercise of the abilities characteristic of personal agency; the contention that the possession of biological needs is prior to the possession of the abilities characteristic of personal agency. Finally, three philosophical usages of ‘normative’ are distinguished. On two of these, to describe a phenomenon or claim as ‘normative’ is to describe it as value‐dependent. A description of a phenomenon or claim as ‘normative’ in the third sense does not entail such value‐dependency, though it leaves open the possibility that value depends upon the phenomenon or upon the truth of the claim. It is argued that while survival needs (or claims about them) may well be normative in this third sense, they are normative in neither of the first two. Thus, the idea of absolute need is not inherently normative in either of the first two senses.
    April 16, 2013   doi: 10.1111/bioe.12020   open full text
  • Embryos, The Principle of Proportionality, and the Shaky Ground of Moral Respect.
    Jonathan Pugh.
    Bioethics. February 28, 2013
    The debate concerning the moral permissibility of using human embryos in human embryonic stem cell (hESC) research has long centred on the question of the embryo's supposed right to life. However, in focussing only on this question, many opponents to hESC research have escaped rigorous scrutiny by making vague and unfounded appeals to the concept of moral respect in order to justify their opposition to certain hESC practices. In this paper, I offer a critical analysis of the concept of moral respect, and its use to support the intuitively appealing principle of proportionality in hESC research. I argue that if proponents of this principle are to justify its adoption by appealing to the concept of moral respect, they must explain two things concerning the nature of the moral respect owed to embryos. First, they must explain which particular aspect of the embryo is morally relevant, and why. Second, they must explain why some uses of embryos in research fail to acknowledge what is morally relevant about the embryo, and thereby involve a violation of the moral respect that they are due. I shall show that providing such explanations may be more difficult than it first appears.
    February 28, 2013   doi: 10.1111/bioe.12013   open full text
  • Dire Necessity and Transformation: Entry‐points for Modern Science in Islamic Bioethical Assessment of Porcine Products in Vaccines.
    Aasim I. Padela, Steven W. Furber, Mohammad A. Kholwadia, Ebrahim Moosa.
    Bioethics. February 28, 2013
    The field of medicine provides an important window through which to examine the encounters between religion and science, and between modernity and tradition. While both religion and science consider health to be a ‘good’ that is to be preserved, and promoted, religious and science‐based teachings may differ in their conception of what constitutes good health, and how that health is to be achieved. This paper analyzes the way the Islamic ethico‐legal tradition assesses the permissibility of using vaccines that contain porcine‐derived components by referencing opinions of several Islamic authorities. In the Islamic ethico‐legal tradition controversy surrounds the use of proteins from an animal (pig) that is considered to be impure by Islamic law. As we discuss the Islamic ethico‐legal constructs used to argue for or against the use of porcine‐based vaccines we will call attention to areas where modern medical data may make the arguments more precise. By highlighting areas where science can buttress and clarify the ethico‐legal arguments we hope to spur an enhanced applied Islamic bioethics discourse where religious scholars and medical experts use modern science in a way that remains faithful to the epistemology of Islamic ethics to clarify what Islam requires of Muslim patients and healthcare workers.
    February 28, 2013   doi: 10.1111/bioe.12016   open full text
  • A method of Reflexive Balancing in a Pragmatic, Interdisciplinary and Reflexive Bioethics.
    Jonathan Ives.
    Bioethics. February 28, 2013
    In recent years there has been a wealth of literature arguing the need for empirical and interdisciplinary approaches to bioethics, based on the premise that an empirically informed ethical analysis is more grounded, contextually sensitive and therefore more relevant to clinical practice than an ‘abstract’ philosophical analysis. Bioethics has (arguably) always been an interdisciplinary field, and the rise of ‘empirical’ (bio)ethics need not be seen as an attempt to give a new name to the longstanding practice of interdisciplinary collaboration, but can perhaps best be understood as a substantive attempt to engage with the nature of that interdisciplinarity and to articulate the relationship between the many different disciplines (some of them empirical) that contribute to the field. It can also be described as an endeavour to explain how different disciplinary approaches can be integrated to effectively answer normative questions in bioethics, and fundamental to that endeavour is the need to think about how a robust methodology can be articulated that successfully marries apparently divergent epistemological and metaethical perspectives with method. This paper proposes ‘Reflexive Bioethics’ (RB) as a methodology for interdisciplinary and empirical bioethics, which utilizes a method of ‘Reflexive Balancing’ (RBL). RBL has been developed in response to criticisms of various forms of reflective equilibrium, and is built upon a pragmatic characterization of Bioethics and a ‘quasi‐moral foundationalism’, which allows RBL to avoid some of the difficulties associated with RE and yet retain the flexible egalitarianism that makes it intuitively appealing to many.
    February 28, 2013   doi: 10.1111/bioe.12018   open full text
  • Conscientious Refusals and Reason‐Giving.
    Jason Marsh.
    Bioethics. February 28, 2013
    Some philosophers have argued for what I call the reason‐giving requirement for conscientious refusal in reproductive healthcare. According to this requirement, healthcare practitioners who conscientiously object to administering standard forms of treatment must have arguments to back up their conscience, arguments that are purely public in character. I argue that such a requirement, though attractive in some ways, faces an overlooked epistemic problem: it is either too easy or too difficult to satisfy in standard cases. I close by briefly considering whether a version of the reason‐giving requirement can be salvaged despite this important difficulty.
    February 28, 2013   doi: 10.1111/bioe.12012   open full text
  • Medical Ghostwriting and Informed Consent.
    Ben Almassi.
    Bioethics. February 28, 2013
    Ghostwriting in its various forms has received critical scrutiny from medical ethicists, journal editors, and science studies scholars trying to explain where ghostwriting goes wrong and ascertain how to counter it. Recent analyses have characterized ghostwriting as plagiarism or fraud, and have urged that it be deterred through stricter compliance with journal submission requirements, conflict of interest disclosures, author‐institutional censure, legal remedies, and journals' refusal to publish commercially sponsored articles. As a supplement to such efforts, this paper offers a critical assessment of medical ghostwriting as contrary to good patient care, on the grounds that it contradicts established general principles guiding clinical ethics. Specifically, I argue that ghostwriting undermines trust relationships between authors and their readers, and between these readers and their trusting patients, and in so doing contradicts the duty of respect for patient autonomy by obstructing informed consent. For this reason, complicity in ghostwriting practices should be understood as a violation of the professional ethical duties of physicians and other healthcare workers.
    February 28, 2013   doi: 10.1111/bioe.12017   open full text
  • Health as Normal Function: a Weak Link in Daniels's Theory of Just Health Distribution.
    Erik Krag.
    Bioethics. December 21, 2012
    Drawing on Christopher Boorse's Biostatistical Theory (BST), Norman Daniels contends that a genuine health need is one which is necessary to restore normal functioning – a supposedly objective notion which he believes can be read from the natural world without reference to potentially controversial normative categories. But despite his claims to the contrary, this conception of health harbors arbitrary evaluative judgments which make room for intractable disagreement as to which conditions should count as genuine health needs and therefore which needs should be met. I begin by offering a brief summary of Boorse's BST, the theory to which Daniels appeals for providing the conception of health as normal functioning upon which his overall distributive scheme rests. Next, I consider what I call practical objections to Daniels's use of Boorse's theory. Finally I recount Elseljin Kingma's theoretical objection to Boorse's BST and discuss its impact on Daniels's overall theory. Though I conclude that Boorse's view, so weakened, will no longer be able to sustain the judgments which Daniels's theory uses it to reach, in the end, I offer Daniels an olive branch by briefly sketching an alternative strategy for reaching suitably objective conclusions regarding the health and/or disease status of various conditions.
    December 21, 2012   doi: 10.1111/bioe.12007   open full text
  • To Donate a Kidney: Public Perspectives from Pakistan.
    Farhat Moazam, Aamir M. Jafarey, Bushra Shirazi.
    Bioethics. December 21, 2012
    Despite the majority opinion of Muslim jurists that organ donation is permitted in Sharia, surveys indicate continuing resistance by lay Muslims, especially to donating organs following death. Pakistan, a country with 165 million Muslims, currently reliant on live donors, is considering steps to establish deceased donor programs which will require public acceptance and support. This article analyzes the results of in‐depth interviews with 105 members of the public focusing on opinions and knowledge about juristic rulings regarding kidney donations, donor‐family dynamics in deceased donation decisions, and attitudes towards buying kidneys. The objective was to determine the influence if any of cultural and religious values, and norms of traditional family structures and kinships, on decisions to donate. Study participants view donation of kidneys, particularly from the deceased, through a different lens from that used by jurists and physicians, one that also does not conform to familiar paradigms defining ethical organ donation. A socially modulated understanding of Islam passed down the generations, and longstanding family‐centric norms, shape the moral worldview of many rather than academic juristic rulings or non‐contextual concepts of autonomy and rights. The results of this study also highlight that medical science may be universal but its application occurs within particularities of cultural and religious values, social constructs of the self and its relationship with others, and different ways in which humans comprehend illness, suffering, and death. These findings are of relevance both to transplant related professionals and bioethicists involved with this field.
    December 21, 2012   doi: 10.1111/bioe.12010   open full text
  • The Promise and Peril of the Pharmacological Enhancer Modafinil.
    Julie Tannenbaum.
    Bioethics. December 20, 2012
    The neuro‐enhancement Modafinil promises to dramatically increase users' waking hours without much sacrifice to clarity of thought and without serious side effects (inducing addiction). For Modafinil to be advantageous, its usage must enable access to goods that themselves improve the quality of one's life. I draw attention to a variety of conditions that must be met for an experience, activity or object to improve the quality of one's life, such as positional, relational, and saturation conditions, as well as it's being good for its own sake. I discuss and describe the contexts in which widespread usage (legal or not) of Modafinil would undermine these conditions being met, and thus users would fail to significantly improve the quality of their lives and would in fact potentially make both themselves and nonusers worse off in important respects thus far overlooked by critics. In the right contexts, where free time is protected and prolonged, Modafinil does have a variety of potential benefits including, most interestingly, a distinctive form of agency possible only in free time. The potential disadvantages and advantages highlighted in this article are relevant not only to public institutions deciding whether to legalize Modafinil's use as an enhancement but also to individuals deciding whether to use it illegally, as well as to the questions of how and whether to alter key features of one's context (e.g. regulating work hours or extending social services) rather than, or in addition, to regulating the use of enhancement drugs such as Modafinil.
    December 20, 2012   doi: 10.1111/bioe.12008   open full text
  • A Framework to Link International Clinical Research to the Promotion of Justice in Global Health.
    Bridget Pratt, Bebe Loff.
    Bioethics. December 20, 2012
    How international research might contribute to justice in global health has not been substantively addressed by bioethics. Theories of justice from political philosophy establish obligations for parties from high‐income countries owed to parties from low and middle‐income countries. We have developed a new framework that is based on Jennifer Ruger's health capability paradigm to strengthen the link between international clinical research and justice in global health. The ‘research for health justice’ framework provides direction on three aspects of international clinical research: the research target, research capacity strengthening, and post‐trial benefits. It identifies the obligations of justice owed by national governments, research funders, research sponsors, and investigators to trial participants and host communities. These obligations vary from those currently articulated in international research ethics guidelines. Ethical requirements of a different kind are needed if international clinical research is to advance global health equity.
    December 20, 2012   doi: 10.1111/bioe.12009   open full text
  • Informed Consent in Direct‐to‐Consumer Personal Genome Testing: The Outline of A Model between Specific and Generic Consent.
    Eline M. Bunnik, A. Cecile J.W. Janssens, Maartje H.N. Schermer.
    Bioethics. November 08, 2012
    Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we argue that current practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings.
    November 08, 2012   doi: 10.1111/bioe.12004   open full text
  • Organ Sales: Exploitative At Any Price?
    Rob Lawlor.
    Bioethics. October 01, 2012
    In many cases, claims that a transaction is exploitative will focus on the details of the transaction, such as the price paid or conditions. For example, in a claim that a worker is exploited, the grounds for the claim are usually that the pay is not sufficient or the working conditions too dangerous. In some cases, however, the claim that a transaction is exploitative is not seen to rely on these finer details. Many, for example, claim that organ sales would be exploitative, in a way that doesn't seem to depend on the details. This article considers, but ultimately rejects, a number of arguments which could be used to defend this sort of claim.
    October 01, 2012   doi: 10.1111/bioe.12000   open full text
  • End‐Of‐Life Decisions And The Reinvented Rule Of Double Effect: A Critical Analysis.
    Anna Lindblad, Niels Lynöe, Niklas Juth.
    Bioethics. October 01, 2012
    The Rule of Double Effect (RDE) holds that it may be permissible to harm an individual while acting for the sake of a proportionate good, given that the harm is not an intended means to the good but merely a foreseen side‐effect. Although frequently used in medical ethical reasoning, the rule has been repeatedly questioned in the past few decades. However, Daniel Sulmasy, a proponent who has done a lot of work lately defending the RDE, has recently presented a reformulated and more detailed version of the rule. Thanks to its greater precision, this reinvented RDE avoids several problems thought to plague the traditional RDE. Although an improvement compared with the traditional version, we argue that Sulmasy's reinvented RDE will not stand closer scrutiny. Not only has the range of proper applicability narrowed significantly, but, more importantly, Sulmasy fails to establish that there is a morally relevant distinction between intended and foreseen effects. In particular, he fails to establish that there is any distinction that can account for the alleged moral difference between sedation therapy and euthanasia.
    October 01, 2012   doi: 10.1111/bioe.12001   open full text
  • Justifying Community Benefit Requirements In International Research.
    Robert C. Hughes.
    Bioethics. October 01, 2012
    It is widely agreed that foreign sponsors of research in low‐ and middle‐income countries (LMICs) are morally required to ensure that their research benefits the broader host community. There is no agreement, however, about how much benefit or what type of benefit research sponsors must provide, nor is there agreement about what group of people is entitled to benefit. To settle these questions, it is necessary to examine why research sponsors have an obligation to benefit the broader host community, not only their subjects. Justifying this claim is not straightforward. There are three justifications for an obligation to benefit host communities that each apply to some research, but not to all. Each requires a different amount of benefit, and each requires benefit to be directed toward a different group. If research involves significant net risk to LMIC subjects, research must provide adequate benefit to people in LMICs to avoid an unjustified appeal to subjects’ altruism. If research places significant burdens on public resources, research must provide fair compensation to the community whose public resources are burdened. If research is for profit, research sponsors must contribute adequately to the upkeep of public goods from which they benefit in order to avoid the wrong of free‐riding, even if their use of these public goods is not burdensome.
    October 01, 2012   doi: 10.1111/bioe.12002   open full text
  • Epigenetics And The Environment In Bioethics.
    Charles Dupras, Vardit Ravitsky, Bryn Williams‐Jones.
    Bioethics. October 01, 2012
    A rich literature in public health has demonstrated that health is strongly influenced by a host of environmental factors that can vary according to social, economic, geographic, cultural or physical contexts. Bioethicists should, we argue, recognize this and – where appropriate – work to integrate environmental concerns into their field of study and their ethical deliberations. In this article, we present an argument grounded in scientific research at the molecular level that will be familiar to – and so hopefully more persuasive for – the biomedically‐inclined in the bioethics community. Specifically, we argue that the relatively new field of molecular epigenetics provides novel information that should serve as additional justification for expanding the scope of bioethics to include environmental and public health concerns. We begin by presenting two distinct visions of bioethics: the individualistic and rights‐oriented and the communitarian and responsibility‐oriented. We follow with a description of biochemical characteristics distinguishing epigenetics from genetics, in order to emphasize the very close relationship that exists between the environment and gene expression. This then leads to a discussion of the importance of the environment in determining individual and population health, which, we argue, should shift bioethics towards a Potterian view that promotes a communitarian‐based sense of responsibility for the environment, in order to fully account for justice considerations and improve public health.
    October 01, 2012   doi: 10.1111/j.1467-8519.2012.02007.x   open full text
  • Randomized Controlled Trials Of Maternal‐Fetal Surgery: A Challenge To Clinical Equipoise.
    H.C.M.L. Rodrigues, P.P. Van Den Berg.
    Bioethics. October 01, 2012
    This article focuses on maternal‐fetal surgery (MFS) and on the concept of clinical equipoise that is a widely accepted requirement for conducting randomized controlled trials (RCT). There are at least three reasons why equipoise is unsuitable for MFS. First, the concept is based on a misconception about the nature of clinical research and the status of research subjects. Second, given that it is not clear who the research subject/s in MFS is/are, if clinical equipoise is to be used as a criterion to test the ethical appropriateness of RCT, its meaning should be unambiguous. Third, because of the multidisciplinary character of MFS, it is not clear who should be in equipoise. As a result, we lack an adequate criterion for the ethical review of MFS protocols. In our account, which is based on Chervenak and McCullough's seminal work in the field of obstetric ethics, equipoise is abandoned. and RCT involving MFS can be ethically initiated when a multidisciplinary ethics review board (ERB), having an evidence‐based assessment of the risks involved, is convinced that the value of answering the research hypothesis, for the sake of the health interests of future pregnant women carrying fetuses with certain congenital birth defects, justifies the actual risks research participants might suffer within a set limit of low/manageable.
    October 01, 2012   doi: 10.1111/j.1467-8519.2012.02008.x   open full text
  • In Defense Of Prenatal Genetic Interventions.
    Timothy F. Murphy.
    Bioethics. October 01, 2012
    Jürgen Habermas has argued against prenatal genetic interventions used to influence traits on the grounds that only biogenetic contingency in the conception of children preserves the conditions that make the presumption of moral equality possible. This argument fails for a number of reasons. The contingency that Habermas points to as the condition of moral equality is an artifact of evolutionary contingency and not inviolable in itself. Moreover, as a precedent for genetic interventions, parents and society already affect children's traits, which is to say there is moral precedent for influencing the traits of descendants. A veil‐of‐ignorance methodology can also be used to justify prenatal interventions through its method of advance consent and its preservation of the contingency of human identities in a moral sense. In any case, the selection of children's traits does not undermine the prospects of authoring a life since their future remains just as contingent morally as if no trait had been selected. Ironically, the prospect of preserving human beings as they are – to counteract genetic drift – might even require interventions to preserve the ability to author a life in a moral sense. In light of these analyses, Habermas' concerns about prenatal genetic interventions cannot succeed as objections to their practice as a matter of principle; the merits of these interventions must be evaluated individually.
    October 01, 2012   doi: 10.1111/j.1467-8519.2012.02009.x   open full text
  • Moral Philosophers Are Moral Experts! A Reply To David Archard.
    John‐Stewart Gordon.
    Bioethics. September 19, 2012
    In his article ‘Why Moral Philosophers Are Not and Should Not Be Moral Experts’ David Archard attempts to show that his argument from common‐sense morality is more convincing than other competing arguments in the debate. I examine his main line of argumentation and eventually refute his main argument in my reply.
    September 19, 2012   doi: 10.1111/j.1467-8519.2012.02004.x   open full text
  • Ethical Issues Related To Screening For Preeclampsia.
    Jennifer M. Jørgensen, Paula L. Hedley, Mickey Gjerris, Michael Christiansen.
    Bioethics. September 19, 2012
    The implementation of new methods of treating and preventing disease raises many question of both technical and moral character. Currently, many studies focus on developing a screening test for preeclampsia (PE), a disease complicating 2–8% of pregnancies, potentially causing severe consequences for pregnant women and their fetuses. The purpose is to develop a test that can identify pregnancies at high risk for developing PE sufficiently early in pregnancy to allow for prophylaxis. However, the question of implementing a screening test for PE does not only involve an evaluation of technical feasibility and clinical efficacy, it also requires an analysis of how the test influences the conditions and choices for those tested. This study evaluates state‐of‐the‐art techniques for preeclampsia screening in an ethical framework, pointing out the central areas of moral relevance within the context of such screening activity. Furthermore, we propose ethical guidelines that a screening programme for PE should meet in order to become an uncontroversial addition to prenatal health care.
    September 19, 2012   doi: 10.1111/j.1467-8519.2012.02005.x   open full text
  • The Substance View: A Critique (Part 2).
    Rob Lovering.
    Bioethics. September 19, 2012
    In my initial critique of the substance view, I raised reductio‐style objections to the substance view's conclusion that the standard human fetus has the same intrinsic value and moral standing as the standard adult human being, among others. In this follow‐up critique, I raise objections to some of the premises invoked in support of this conclusion. I begin by briefly presenting the substance view as well as its defense. (For a more thorough presentation, see the first part of my critique.) I then raise objections to three claims involved in the substance view's defense: the claim that the standard human fetus's intrinsic value and moral standing is a function of its potentiality; the claim that the standard human fetus's intrinsic value and moral standing is a function of its essential properties; and the claim that it is the possession of the basic potential for rational moral agency that best accounts for the wrongness of killing the standard human fetus, among others.
    September 19, 2012   doi: 10.1111/j.1467-8519.2012.02006.x   open full text
  • Standard Of Care, Professional Obligations, And Distributive Justice.
    Douglas Mackay.
    Bioethics. September 16, 2012
    The problem of standard‐of‐care in clinical research concerns the level of care that investigators ought to provide to research subjects in the control arm of their clinical trials. Commentators differ sharply on whether subjects in trials conducted in lower income countries should be provided with the same level of care as subjects in trials conducted in higher income countries. I consider an argument that commentators have employed on both sides of this debate: professional role arguments. These arguments claim to justify a conclusion to the standard‐of‐care problem solely by appeal to the professional obligations that investigators possess. I argue that prominent versions of professional role arguments cannot justify a solution to the problem of standard‐of‐care that is both determinate and reasonable simply by appeal to the professional obligations of investigators. Instead, to do so, one must also (1) determine the level of care or types of treatment that individuals are entitled to as a matter of distributive justice, and (2) identify which agents possess the duties that correspond to these entitlements. The level of care that investigators owe to subjects in the control arm of their clinical trials is thus in part dependent on the level of care that these subjects are entitled to as a matter of distributive justice, and whether it is the investigators who possess the corresponding distributive obligation to provide them with the care that they are entitled to.
    September 16, 2012   doi: 10.1111/j.1467-8519.2012.02003.x   open full text
  • Valuing Lives and Allocating Resources: A Defense of the Modified Youngest First Principle of Scarce Resource Distribution.
    Ruth Tallman.
    Bioethics. July 29, 2012
    In this paper, I argue that the ‘modified youngest first’ principle provides a morally appropriate criterion for making decisions regarding the distribution of scarce medical resources, and that it is morally preferable to the simple ‘youngest first’ principle. Based on the complete lives system's goal of maximizing complete lives rather than individual life episodes, I argue that essential to the value we see in complete lives is the first person value attributed by the experiencer of that life. For a life to be ‘complete’ or ‘incomplete,’ the subject of that life must be able to understand the concept of a complete life, to have started goals and projects, and to know what it would be for that life to be complete. As the very young are not able to do this, it can reasonably be said that their characteristically human lives have not yet begun, giving those accepting a complete lives approach good reason to accept the modified youngest first principle over a simple ‘youngest first’ approach.
    July 29, 2012   doi: 10.1111/j.1467-8519.2012.01994.x   open full text
  • Islamic Views On Artificial Nutrition And Hydration In Terminally Ill Patients.
    Sami Alsolamy.
    Bioethics. July 29, 2012
    Withholding and withdrawing artificial nutrition and hydration from terminally ill patients poses many ethical challenges. The literature provides little information about the Islamic beliefs, attitudes, and laws related to these challenges. Artificial nutrition and hydration may be futile and reduce quality of life. They can also harm the terminally ill patient because of complications such as aspiration pneumonia, dyspnea, nausea, diarrhea, and hypervolemia. From the perspective of Islam, rules governing the care of terminally ill patients are derived from the principle that injury and harm should be prevented or avoided. The hastening of death by the withdrawal of food and drink is forbidden, but Islamic law permits the withdrawal of futile, death‐delaying treatment, including life support. Nutritional support is considered basic care and not medical treatment, and there is an obligation to provide nutrition and hydration for the dying person unless it shortens life, causes more harm than benefit, or is contrary to an advance directive that is consistent with Islamic law. The decision about withholding or withdrawing artificial nutrition and hydration from the terminally ill Muslim patient is made with informed consent, considering the clinical context of minimizing harm to the patient, with input from the patient, family members, health care providers, and religious scholars.
    July 29, 2012   doi: 10.1111/j.1467-8519.2012.01996.x   open full text
  • Amnesia, Anesthesia, and Warranted Fear.
    Vanessa Carbonell.
    Bioethics. July 29, 2012
    Is a painful experience less bad for you if you will not remember it? Do you have less reason to fear it? These questions bear on how we think about medical procedures and surgeries that use an anesthesia regimen that leaves patients conscious – and potentially in pain – but results in complete ‘drug‐induced amnesia’ after the fact. I argue that drug‐induced amnesia does not render a painful medical procedure a less fitting object of fear, and thus the prospect of amnesia does not give patients a reason not to fear it. I expose three mistakes in reasoning that might explain our tendency to view pain or discomfort as less fearful in virtue of expected amnesia: a mistaken view of personal identity; a mistaken view of the target of anticipation; and a mistaken method of incorporating past evidence into calculations about future experiences. Ultimately my argument has implications for whether particular procedures are justified and how medical professionals should speak with anxious patients about the prospect of drug‐induced amnesia.
    July 29, 2012   doi: 10.1111/j.1467-8519.2012.01995.x   open full text
  • ‘One Can Always Say No.’ Enriching the Bioethical Debate on Antisocial Behaviour, Neurobiology and Prevention: Views of Juvenile Delinquents.
    Dorothee Horstkötter, Ron Berghmans, Frans Feron, Guido De Wert.
    Bioethics. July 29, 2012
    Genomic and neuro‐scientific research into the causes and course of antisocial behaviour triggers bioethical debate. Often, these new developments are met with reservation, and possible drawbacks and negative side‐effects are pointed out. This article reflects on these scientific developments and the bioethical debate by means of an exploration of the perspectives of one important stakeholder group: juveniles convicted of a serious crime who stay in a juvenile justice institution. The views of juveniles are particularly interesting, as possible applications of current and future scientific findings are considered to be most effective if applied early in life. Based on their statements we come to the following provisional conclusions. Concerns about labelling and stigmatization are recognized and widely shared. Possible effects on one's identity are acknowledged too. Yet, a possible biological underpinning of one's antisocial behaviour is not considered to result in the development of a criminal identity. Nonetheless, psychopharmacological interventions are experienced as endangering one's current self. Concerns regarding the refusal of responsibility and the blaming of one's genes or brain can be put into perspective. Instead, participants emphasize the motive of own choice as underlying their criminal behaviour. Moreover, bioethical debate should pay attention to the role of parents of children at risk and the parent‐child relationship in families at‐risk. We argue that the short‐term and long‐term interests of children at risk, as well as their interests and those of society at large, may conflict. In order to deal appropriately with newly arising dilemmas, a normative framework needs to be developed.
    July 29, 2012   doi: 10.1111/j.1467-8519.2012.01997.x   open full text
  • Competence and Ability.
    Eric Vogelstein.
    Bioethics. July 29, 2012
    It is nearly universally thought that the kind of decision‐making competence that gives one a strong prima facie right to make one's own medical decisions essentially involves having an ability (or abilities) of some sort, or having a certain level or degree of ability (or abilities). When put under philosophical scrutiny, however, this kind of theory does not hold up. I will argue that being competent does not essentially involve abilities, and I will propose and defend a theory of decision‐making competence according to which one is competent only if one possesses a certain kind of rationality in making treatment decisions.
    July 29, 2012   doi: 10.1111/j.1467-8519.2012.01998.x   open full text
  • The Principle of Procreative Beneficence: Old Arguments and A New Challenge.
    Andrew Hotke.
    Bioethics. July 29, 2012
    In the last ten years, there have been a number of attempts to refute Julian Savulescu's Principle of Procreative Beneficence; a principle which claims that parents have a moral obligation to have the best child that they can possibly have. So far, no arguments against this principle have succeeded at refuting it. This paper tries to explain the shortcomings of some of the more notable arguments against this principle. I attempt to break down the argument for the principle and in doing so, I explain what is needed to properly refute it. This helps me show how and why the arguments of Rebecca Bennett, Sarah Stoller and others fail to refute the principle. Afterwards, I offer a new challenge to the principle. I attack what I understand to be a fundamental premise of the argument, a premise which has been overlooked in the literature written about this principle. I argue that there is no reason to suppose, as Savulescu does, that morality requires us to do what we have most reason to do. If we reject this premise, as I believe we have reason to do, the argument for Procreative Beneficence fails.
    July 29, 2012   doi: 10.1111/j.1467-8519.2012.01999.x   open full text
  • Eugenic Selection Benefits Embryos.
    Mark Walker.
    Bioethics. July 29, 2012
    The primary question to be addressed here is whether pre‐implantation genetic diagnosis (PGD), used for both negative and positive trait selection, benefits potential supernumerary embryos. The phrase ‘potential supernumerary embryos’ is used to indicate that PGD is typically performed on a set of embryos, only some of which will be implanted. Prior to any testing, each embryo in the set is potentially supernumerary in the sense that it may not be selected for implantation. Those embryos that are not selected, and hence destroyed or frozen, are ‘actually supernumerary’. The argument to be advanced is hypothetical: If embryos may be said to benefit or be harmed by our actions, then PGD used to select for an embryo or embryos with the highest expected Wellbeing benefits potential supernumerary embryos. The argument shows that the ‘non‐identity’ problem is not sufficient to show that eugenic selection does not benefit supernumerary embryos.
    July 29, 2012   doi: 10.1111/j.1467-8519.2012.02000.x   open full text
  • Savior Siblings, Parenting And The Moral Valorization Of Children.
    Kimberly Strong, Ian Kerridge, Miles Little.
    Bioethics. July 29, 2012
    Philosophy has long been concerned with ‘moral status’. Discussions about the moral status of children, however, seem often to promote confusion rather than clarity. Using the creation of ‘savior siblings’ as an example, this paper provides a philosophical critique of the moral status of children and the moral relevance of parenting and the role that formative experience, regret and relational autonomy play in parental decisions. We suggest that parents make moral decisions that are guided by the moral significance they attach to children, to sick children and most importantly, to a specific sick child (theirs). This moral valorization is rarely made explicit and has generally been ignored by both philosophers and clinicians in previous critiques. Recognizing this, however, may transform not only the focus of bioethical discourse but also the policies and practices surrounding the care of children requiring bone marrow or cord blood transplantation by better understanding the values at stake behind parental decision making.
    July 29, 2012   doi: 10.1111/j.1467-8519.2012.02001.x   open full text
  • A Critical Analysis and Discussion of Clinical Research Ethics in the Russian Federation and Their Implications for Western Sponsored Trials.
    Christopher Leintz.
    Bioethics. July 29, 2012
    Globalization, political upheavals, and Western economic struggles have caused a geographical reprioritization in the realm of drug development and human clinical research. Regulatory and cost hurdles as well as a saturation of research sites and subjects in Western countries have forced the pharmaceutical industry to place an unprecedented level of importance on emerging markets, injecting Western corporate initiatives into cultures historically and socially isolated from Western‐centric value systems. One of the greatest recipients of this onslaught of Western business and research practices is the Russian Federation. Namely, market forces are dictating a focused research initiative in the traditional emerging markets, but this focus may be at the expense of individual and societal dignity.
    July 29, 2012   doi: 10.1111/j.1467-8519.2012.02002.x   open full text
  • Living Organ Procurement From The Mentally Incompetent: The Need For More Appropriate Guidelines.
    Kristof Van Assche, Gilles Genicot, Sigrid Sterckx.
    Bioethics. July 05, 2012
    With the case of Belgium as a negative example, this paper will evaluate the legitimacy of using mentally incompetents as organ sources. The first section examines the underlying moral dilemma that results from the necessity of balancing the principle of respect for persons with the obligation to help people in desperate need. We argue for the rejection of a radical utilitarian approach but also question the appropriateness of a categorical prohibition. Section two aims to strike a fair balance between the competing interests at stake and to define the conditions under which organ harvest from mentally incompetents might be morally acceptable. To this end, we morally assess the main requirements that have been put forward to allow organ removal from incompetent donors. We conclude that the current Belgian legislation is far too permissive and that national regulations that do not permit the harvest of non‐regenerable organs from mentally incompetents in exceptional circumstances are too restrictive. On the basis of this discussion, we propose a number of guiding principles for decision‐making in this area.
    July 05, 2012   doi: 10.1111/j.1467-8519.2012.01982.x   open full text
  • The Nocebo Effect Of Informed Consent.
    Shlomo Cohen.
    Bioethics. July 05, 2012
    The nocebo effect, the mirror‐phenomenon to the placebo effect, is when the expectation of a negative outcome precipitates the corresponding symptom or leads to its exacerbation. One of the basic ethical duties in health care is to obtain informed consent from patients before treatment; however, the disclosure of information regarding potential complications or side effects that this involves may precipitate a nocebo effect. While dilemmas between the principles of respect for patient autonomy and of nonmaleficence are recognized in medical ethics, there has not yet been an ethical discussion focused on the potential dilemma raised by the nocebo effect of informed consent (NEIC). This dilemma is especially pernicious, since it involves a direct causality of harm by the caregiver that is unparalleled by other potential harmful effects of information disclosure. This paper articulates the dilemma of the NEIC and offers a seminal ethical analysis.
    July 05, 2012   doi: 10.1111/j.1467-8519.2012.01983.x   open full text
  • Are Bans On Kidney Sales Unjustifiably Paternalistic?
    Erik Malmqvist.
    Bioethics. July 05, 2012
    This paper challenges the view that bans on kidney sales are unjustifiably paternalistic, that is, that they unduly deny people the freedom to make decisions about their own bodies in order to protect them from harm. I argue that not even principled anti‐paternalists need to reject such bans. This is because their rationale is not hard paternalism, which anti‐paternalists repudiate, but soft paternalism, which they in principle accept. More precisely, I suggest that their rationale is what Franklin Miller and Alan Wertheimer call ‘group soft paternalism’. Group soft paternalistic policies restrict the freedom of autonomous individuals, not for their own good (hard paternalism), but as an unavoidable consequence of seeking to protect other, non‐autonomous individuals from harms that they have not voluntarily chosen (soft paternalism). Group soft paternalism supports prohibiting kidney sales on three conditions: (1) that such sales are potentially harmful to vendors, (2) that many vendors would suffer impaired autonomy, and (3) that distinguishing between autonomous and non‐autonomous vendors and interfering only with the latter is unfeasible. I provide reasons for thinking that these conditions will often hold.
    July 05, 2012   doi: 10.1111/j.1467-8519.2012.01984.x   open full text
  • A Costly Separation Between Withdrawing And Withholding Treatment In Intensive Care.
    Dominic Wilkinson, Julian Savulescu.
    Bioethics. July 05, 2012
    Ethical analyses, professional guidelines and legal decisions support the equivalence thesis for life‐sustaining treatment: if it is ethical to withhold treatment, it would be ethical to withdraw the same treatment. In this paper we explore reasons why the majority of medical professionals disagree with the conclusions of ethical analysis. Resource allocation is considered by clinicians to be a legitimate reason to withhold but not to withdraw intensive care treatment. We analyse five arguments in favour of non‐equivalence, and find only relatively weak reasons to restrict rationing to withholding treatment. On the contrary, resource allocation provides a strong argument in favour of equivalence: non‐equivalence causes preventable death in critically ill patients. We outline two proposals for increasing equivalence in practice: (1) reduction of the mortality threshold for treatment withdrawal, (2) time‐limited trials of intensive care. These strategies would help to move practice towards more rational treatment limitation decisions.
    July 05, 2012   doi: 10.1111/j.1467-8519.2012.01981.x   open full text
  • A Proposed Approach To Informed Consent For Biobanks In China.
    Min Liu, Qingli Hu.
    Bioethics. July 05, 2012
    Biobanks are potential goldmines for genomics research. They have become increasingly common as a means to determine the relationship between lifestyle, environmental exposures and predisposition to genetic disease. More and more countries are developing massive national scale biobanks, including Iceland, the UK and Estonia.Now several large‐scale regional and national biobanks are planned in China, such as Shanghai Biobank, which is defined as a key‐element in Shanghai's twelfth five‐year Development Plan of Science and Technology. It is imperative that the authors who are in charge of the ethical aspect of Shanghai Biobank discuss the ethical aspects of these biobanks up front. Currently there is a great deal of heterogeneity in the approaches to informed consent taken by different countries. In the article, after briefly introducing the biobanks in China, we focus on the three most common approaches: classical informed consent, tiered consent, and one‐time general (or blanket) consent, and propose a version of the latter for China, based on compelling arguments.
    July 05, 2012   doi: 10.1111/j.1467-8519.2012.01985.x   open full text
  • Existence: Who Needs It? The Non‐Identity Problem And Merely Possible People.
    Rivka Weinberg.
    Bioethics. June 10, 2012
    In formulating procreative principles, it makes sense to begin by thinking about whose interests ought to matter to us. Obviously, we care about those who exist. Less obviously, but still uncontroversially, we care about those who will exist. Ought we to care about those who might possibly, but will not actually, exist?Recently, unusual positions have been taken regarding merely possible people and the non‐identity problem. David Velleman argues that what might have happened to you – an existent person – often doesn't merit moral consideration since the alternative person one would have been had what might have happened actually happened is a merely possible person about whom one has no reason to care. He argues that his way of thinking can eliminate the non‐identity problem. Caspar Hare argues that merely possible people have interests and are morally relevant. He argues that we can solve the non‐identity problem by rejecting the view that merely possible people are morally irrelevant. Both Hare and Velleman argue that focusing on one's de dicto rather than on one's de re children can help us avoid the non‐identity problem.I analyze the role that merely possible, nonexistent hypothetical entities ought to play in our moral reasoning, especially with regard to procreation. I refute both Velleman's and Hare's views and demonstrate the difficulties we encounter when we try to apply their views to common non‐identity cases. I conclude with the common‐sense view regarding who matters, morally: only those who do, did, or will exist.
    June 10, 2012   doi: 10.1111/j.1467-8519.2012.01976.x   open full text
  • Adequate Trust Avails, Mistaken Trust Matters: On The Moral Responsibility Of Doctors As Proxies For Patients' Trust In Biobank Research.
    Linus Johnsson, Gert Helgesson, Mats G. Hansson, Stefan Eriksson.
    Bioethics. June 10, 2012
    In Sweden, most patients are recruited into biobank research by non‐researcher doctors. Patients' trust in doctors may therefore be important to their willingness to participate. We suggest a model of trust that makes sense of such transitions of trust between domains and distinguishes adequate trust from mistaken trust. The unique position of doctors implies, we argue, a Kantian imperfect duty to compensate for patients' mistaken trust. There are at least three kinds of mistaken trust, each of which requires a different set of countermeasures. First, trust is mistaken when necessary competence is lacking; the competence must be developed or the illusion dispelled. Second, trust is irrational whenever the patient is mistaken about his actual reasons for trusting. Care must therefore be taken to support the patient's reasoning and moral agency. Third, some patients inappropriately trust doctors to recommend only research that will benefit them directly. Such trust should be counteracted by nurturing a culture where patients expect to be asked occasionally to contribute to the common good.
    June 10, 2012   doi: 10.1111/j.1467-8519.2012.01977.x   open full text
  • Brain, Mind And Machine: What Are The Implications Of Deep Brain Stimulation For Perceptions Of Personal Identity, Agency And Free Will?
    Nir Lipsman, Walter Glannon.
    Bioethics. June 10, 2012
    Brain implants, such as Deep Brain Stimulation (DBS), which are designed to improve motor, mood and behavioural pathology, present unique challenges to our understanding of identity, agency and free will. This is because these devices can have visible effects on persons' physical and psychological properties yet are essentially undetectable when operating correctly. They can supplement and compensate for one's inherent abilities and faculties when they are compromised by neuropsychiatric disorders. Further, unlike talk therapy or pharmacological treatments, patients need not ‘do’ anything for the treatment to take effect. If one accepts, as we argue here, that brain implants are unique among implantable types of devices, then this can have significant implications for what it means to persist as the same person and be the source of one's thoughts and actions. By examining two of the most common indications for DBS in current use, namely in the motor (Parkinson's Disease) and psychiatric (Major Depression) domains, we further argue that although DBS, as it is currently applied, does not necessarily represent a unique threat to personal identity and agency per se, it introduces an unprecedented ‘third party’ into the debate on these concepts. In this way, DBS can be used as a tool to begin probing, both conceptually and empirically, some of philosophy's most perennial metaphysical questions.
    June 10, 2012   doi: 10.1111/j.1467-8519.2012.01978.x   open full text
  • Are Phase 1 Trials Therapeutic? Risk, Ethics, And Division Of Labor.
    James A. Anderson, Jonathan Kimmelman.
    Bioethics. June 10, 2012
    Despite their crucial role in the translation of pre‐clinical research into new clinical applications, phase 1 trials involving patients continue to prompt ethical debate. At the heart of the controversy is the question of whether risks of administering experimental drugs are therapeutically justified. We suggest that prior attempts to address this question have been muddled, in part because it cannot be answered adequately without first attending to the way labor is divided in managing risk in clinical trials. In what follows, we approach the question of therapeutic justification for phase 1 trials from the viewpoint of five different stakeholders: the drug regulatory authority, the IRB, the clinical investigator, the referring physician, and the patient. Our analysis shows that the question of therapeutic justification actually raises multiple questions corresponding to the roles and responsibilities of the different stakeholders involved. By attending to these contextual differences, we provide more coherent guidance for the ethical negotiation of risk in phase 1 trials involving patients. We close by discussing the implications of our argument for various perennial controversies in phase 1 trial practice.
    June 10, 2012   doi: 10.1111/j.1467-8519.2012.01979.x   open full text
  • Equity Under The Knife: Justice And Evidence In Surgery.
    Wendy Rogers, Christopher Degeling, Cynthia Townley.
    Bioethics. June 10, 2012
    Surgery is an increasingly common and expensive mode of medical intervention. The ethical dimensions of the surgeon‐patient relationship, including respect for personal autonomy and informed consent, are much discussed; but broader equity issues have not received the same attention. This paper extends the understanding of surgical ethics by considering the nature of evidence in surgery and its relationship to a just provision of healthcare for individuals and their populations.
    June 10, 2012   doi: 10.1111/j.1467-8519.2012.01980.x   open full text
  • Ethicovigilance In Clinical Trials.
    David Shaw, Alex Mcmahon.
    Bioethics. April 17, 2012
    This article provides an ethical critique of the Good Clinical Practice (GCP) and Declaration of Helsinki (DoH) documents. While the previous criticisms of GCP are entirely correct, there is much more wrong with the document than has previously been acknowledged, including a circular definition and an astonishing vagueness about ethical principles. In addition to its failure to provide adequate ethical protection of participants, the procedurally dense nature of GCP lends itself to a box‐ticking culture where important ethical issues are overlooked because they are not ‘mentioned on the form’. In contrast, the DoH is a much more effective ethical document, but actually goes too far in one respect. It transpires that the best ethical guidelines for clinical research would be neither over‐prescriptive in regard to particular ethical issues (as the DoH is) nor neglectful of them (as GCP is); correctly framed ethical principles will provide sufficient protection to participants while also ensuring a culture of ethicovigilance in clinical trials.
    April 17, 2012   doi: 10.1111/j.1467-8519.2012.01967.x   open full text
  • Beyond Altruistic And Commercial Contract Motherhood: The Professional Model.
    Liezl Van Zyl, Ruth Walker.
    Bioethics. April 16, 2012
    It has become common to distinguish between altruistic and commercial contract motherhood (or ‘surrogacy’). Altruistic arrangements are based on the ‘gift relationship’: a woman is motivated by altruism to have a baby for an infertile couple, who are free to reciprocate as they see fit. By contrast, in commercial arrangements both parties are motivated by personal gain to enter a legally enforceable agreement, which stipulates that the contract mother or ‘surrogate’ is to bear a child for the intending parents in exchange for a fee. She is required to undergo medical examinations and to refrain from behaviour that could harm the foetus. The intending parents are the child's legal parents from the outset. The parties to the contract can, but are not expected to, maintain contact after the transaction is completed. We argue that contract motherhood should not be organized according to the norms of the gift relationship, and that contract mothers should be compensated for their labour. However, we accept that there are good reasons for rejecting the commercial model as a suitable framework for contract pregnancy, and argue, instead, in favour of viewing it as a profession.
    April 16, 2012   doi: 10.1111/j.1467-8519.2012.01962.x   open full text
  • Telecare, Remote Monitoring And Care.
    Heather Draper, Tom Sorell.
    Bioethics. April 16, 2012
    Telecare is often regarded as a win/win solution to the growing problem of meeting the care needs of an ageing population. In this paper we call attention to some of the ways in which telecare is not a win/win solution but rather aggravates many of the long‐standing ethical tensions that surround the care of the elderly. It may reduce the call on carers' time and energy by automating some aspects of care, particularly daily monitoring. This can release carers for other caring activities. On the other hand, remote and impersonal monitoring seems to fall short of providing care. Monitoring may be used to help elderly users retain independence. But it may also increase the amount of information which flows from users to carers, which can result in a form of function‐creep that actually undermines independence.
    April 16, 2012   doi: 10.1111/j.1467-8519.2012.01961.x   open full text
  • How Do We Want To Grow Old? Anti‐Ageing‐Medicine And The Scope Of Public Healthcare In Liberal Democracies.
    Mark Schweda, Georg Marckmann.
    Bioethics. April 16, 2012
    Healthcare counts as a morally relevant good whose distribution should neither be left to the free market nor be simply imposed by governmental decisions without further justification. This problem is particularly prevalent in the current boom of anti‐ageing medicine. While the public demand for medical interventions which promise a longer, healthier and more active and attractive life has been increasing, public healthcare systems usually do not cover these products and services, thus leaving their allocation to the mechanisms of supply and demand on the free market. This situation raises the question on which basis the underlying preferences for and claims to a longer, healthier life should be evaluated. What makes anti‐ageing medicine eligible for public funding? In this article, we discuss the role of anti‐ageing medicine with regard to the scope and limits of public healthcare. We will first briefly sketch the basic problem of justifying a particular healthcare scheme within the framework of a modern liberal democracy, focusing on the challenge anti‐ageing interventions pose in this regard. In the next section, we will present and discuss three possible solutions to the problem, essentialistic, transcendental, and procedural strategies of defining the scope of public healthcare. We will suggest a procedural solution adopting essentialistic and transcendental elements and discuss its theoretical and practical implications with regard to anti‐ageing medicine.
    April 16, 2012   doi: 10.1111/j.1467-8519.2012.01960.x   open full text
  • Attitudes Towards Euthanasia And Assisted Suicide: A Comparison Between Psychiatrists And Other Physicians.
    Tal Bergman Levy, Shlomi Azar, Ronen Huberfeld, Andrew M. Siegel, Rael D. Strous.
    Bioethics. April 12, 2012
    Euthanasia and physician assisted‐suicide are terms used to describe the process in which a doctor of a sick or disabled individual engages in an activity which directly or indirectly leads to their death. This behavior is engaged by the healthcare provider based on their humanistic desire to end suffering and pain. The psychiatrist's involvement may be requested in several distinct situations including evaluation of patient capacity when an appeal for euthanasia is requested on grounds of terminal somatic illness or when the patient is requesting euthanasia due to mental suffering. We compare attitudes of 49 psychiatrists towards euthanasia and assisted suicide with a group of 54 other physicians by means of a questionnaire describing different patients, who either requested physician‐assisted suicide or in whom euthanasia as a treatment option was considered, followed by a set of questions relating to euthanasia implementation. When controlled for religious practice, psychiatrists expressed more conservative views regarding euthanasia than did physicians from other medical specialties. Similarly female physicians and orthodox physicians indicated more conservative views. Differences may be due to factors inherent in subspecialty education. We suggest that in light of the unique complexity and context of patient euthanasia requests, based on their training and professional expertise psychiatrists are well suited to take a prominent role in evaluating such requests to die and making a decision as to the relative importance of competing variables.
    April 12, 2012   doi: 10.1111/j.1467-8519.2012.01968.x   open full text
  • Heroin Addiction And Voluntary Choice: The Case Of Informed Consent.
    Edmund Henden.
    Bioethics. April 12, 2012
    Does addiction to heroin undermine the voluntariness of heroin addicts' consent to take part in research which involves giving them free and legal heroin? This question has been raised in connection with research into the effectiveness of heroin prescription as a way of treating dependent heroin users. Participants in such research are required to give their informed consent to take part. Louis C. Charland has argued that we should not presume that heroin addicts are competent to do this since heroin addiction by nature involves a loss of ability to resist the desire for heroin. In this article, I argue that Charland is right that we should not presume that heroin addicts are competent to consent, but not for the reason he thinks. In fact, as Charland's critics correctly point out, there is plenty of evidence showing that heroin addicts can resist their desire for heroin. These critics are wrong, however, to conclude from this that we should presume that heroin addicts are competent to give their voluntary consent. There are, I shall argue, other conditions associated with heroin addiction that might constrain heroin addicts' choice in ways likely to undermine the voluntariness of their consent. In order to see this, we need to move beyond the focus on the addicts' desires for heroin and instead consider the wider social and psychological circumstances of heroin addiction, as well as the effects these circumstances may have on the addicts' beliefs about the nature of their options.
    April 12, 2012   doi: 10.1111/j.1467-8519.2012.01969.x   open full text
  • The ‘Warrior Gene’ And The Mãori People: The Responsibility Of The Geneticists.
    Laurence Perbal.
    Bioethics. April 12, 2012
    The ‘gene of’ is a teleosemantic expression that conveys a simplistic and linear relationship between a gene and a phenotype. Throughout the 20th century, geneticists studied these genes of traits. The studies were often polemical when they concerned human traits: the ‘crime gene’, ‘poverty gene’, ‘IQ gene’, ‘gay gene’ or ‘gene of alcoholism’. Quite recently, a controversy occurred in 2006 in New Zealand that started with the claim that a ‘warrior gene’ exists in the Mãori community. This claim came from a geneticist working on the MAOA gene. This article is interested in the responsibility of that researcher regarding the origin of the controversy. Several errors were made: overestimation of results, abusive use of the ‘gene of’ kind of expression, poor communication with the media and a lack of scientific culture. The issues of the debate were not taken into account sufficiently, either from the political, social, ethical or even the genetic points of view. After more than 100 years of debates around ‘genes of’ all kinds (here, the ‘warrior gene’), geneticists may not hide themselves behind the media when a controversy occurs. Responsibilities have to be assumed.
    April 12, 2012   doi: 10.1111/j.1467-8519.2012.01970.x   open full text
  • Misconceptions About Coercion And Undue Influence: Reflections On The Views Of Irb Members.
    Emily Largent, Christine Grady, Franklin G. Miller, Alan Wertheimer.
    Bioethics. April 12, 2012
    Payment to recruit research subjects is a common practice but raises ethical concerns relating to the potential for coercion or undue influence. We conducted the first national study of IRB members and human subjects protection professionals to explore attitudes as to whether and why payment of research participants constitutes coercion or undue influence. Upon critical evaluation of the cogency of ethical concerns regarding payment, as reflected in our survey results, we found expansive or inconsistent views about coercion and undue influence that may interfere with valuable research. In particular, respondents appear to believe that coercion and undue influence lie on a continuum; by contrast, we argue that they are wholly distinct: whereas undue influence is a cognitive distortion relating to assessment of risks and benefits, coercion is a threat of harm. Because payment is an offer, rather than a threat, payment is never coercive.
    April 12, 2012   doi: 10.1111/j.1467-8519.2012.01972.x   open full text
  • Respecting Autonomy Without Disclosing Information.
    Tom Walker.
    Bioethics. April 10, 2012
    There is widespread agreement that it would be both morally and legally wrong to treat a competent patient, or to carry out research with a competent participant, without the voluntary consent of that patient or research participant. Furthermore, in medical ethics it is generally taken that that consent must be informed. The most widely given reason for this has been that informed consent is needed to respect the patient's or research participant's autonomy. In this article I set out to challenge this claim by considering in detail each of the three most prominent ways in which ‘autonomy’ has been conceptualized in the medical ethics literature. I will argue that whilst these accounts support the claim that consent is needed if the treatment of competent patients, or research on competent individuals, is to respect their autonomy, they do not support the claim that informed consent is needed for this purpose.
    April 10, 2012   doi: 10.1111/j.1467-8519.2012.01971.x   open full text
  • What Does Respect For The Patient's Autonomy Require?
    Kam‐Yuen Cheng.
    Bioethics. April 10, 2012
    Personal autonomy presupposes the notion of rationality. What is not so clear is whether, and how, a compromise of rationality to various degrees will diminish a person's autonomy. In bioethical literature, three major types of threat to the rationality of a patient's medical decision are identified: insufficient information, irrational beliefs/desires, and influence of different framing effects. To overcome the first problem, it is suggested that patients be provided with information about their diseases and treatment choices according to the objective standard. I shall explain how this should be finessed. Regarding the negative impact of irrational beliefs/desires, some philosophers have argued that holding irrational beliefs can still be an expression of autonomy. I reject this argument because the degree of autonomy of a decision depends on the degree of rationality of the beliefs or desires on which the decision is based. Hence, to promote patient autonomy, we need to eliminate irrational beliefs by the provision of evidence and good arguments. Finally, I argue that the way to smooth out the framing effects is to present the same information in different perspectives: it is too often assumed that medical information can always be given in a complete and unadorned manner. This article concludes with a cautionary note that the protection of patient autonomy requires much more time and effort than the current practice usually allows.
    April 10, 2012   doi: 10.1111/j.1467-8519.2012.01973.x   open full text