“Is This Something You Want?”: Genetic Counselors’ Accounts of Their Role in Prenatal Decision Making
Published online on August 23, 2013
Abstract
With the widespread availability of prenatal genetic diagnosis, bioethical concerns have emerged about why women make use of these technologies, and the potential eugenic implications. Research on women's experience with genetic screening often suggests that genetic counselors encourage women to undergo prenatal testing and to terminate pregnancies with abnormalities. Yet, this key professional remains relatively understudied. To fill this lacuna, this article examines genetic counselors’ accounts of their role in the decision‐making process, drawing on 26 qualitative interviews with master's‐trained genetic counselors and illustrative observations of a prenatal counselor. In the context of debates about reproductive politics and genomic medicine, I identify the ways in which genetic counselors view their work and position themselves. I find that contrary to assumptions, genetic counselors provide accounts of being just as likely to discourage as to encourage invasive testing, and persuade against instead of promote termination of affected pregnancies. These findings suggest that genetic counselors may play a more nuanced and less coercive role than their critics contend, challenge assumptions about genetic counselors’ roles in prenatal genetic testing uptake and abortion, and shed light on how this specific professional may curb rather than promote eugenic tendencies feared with the normalization of prenatal screening.