Genetic Counselors and the Translation of Genomic Medicine in the Twenty-First Century - Project Summary/Abstract From public health funding to private biotechnology investments, in the first two decades of the twenty-first century it is clear that genomic medicine is now viewed as a key component of health research, health information, and health services. As such, social science scholarship that provides an “outsider” perspective is needed to examine how these technologies are taken up by health professionals, and how professionals tackle ethical and professional dilemmas that surround the offering of genetic knowledge and technologies. This book project examines how genetic counselors—highly trained and understudied clinical professionals—confront the complex arena of scientific-lay translation in the context of recent advances and expansions in genomic medicine. In particular, this project explores the ways in which the genetic counseling profession frames its translational role as an “expert/user” of genetic knowledge, including the profession’s stand on issues concerning advances in genetic science. Specifically, this study’s primary aims are: i) to examine how the genetic counseling profession confronts, interprets and navigates conflicts between the bioethical goals of patient autonomy and informed consent in an era of increasing, and often ambiguous, complex genetic information; ii) to analyze how the genetic counseling profession is managing conflicts-of-interest and professional norms in an era where more of them are employed by biotechnology companies, or in settings in which the lines between research and clinic are blurred; and, iii) to assess how the profession is confronting who should do genetic counseling and what priorities genetic counselors should emphasize. In so doing, this book project will analyze how this growing profession positions itself and its role in genetic decision-making in the context of heated political and bioethical debates about the field in which they are engaged. This book’s unique focus on genetic counselors’ perspectives and accounts regarding their role in the translation of genetic knowledge into the clinic, and for the public at large, matters for how we think about the trajectory of scientific and biomedical knowledge, and can inform the possible ethical and equitable pathways for the deployment of scientific knowledge and technologies, including implications for health delivery, behavior, and outcomes. The project draws on three sources of qualitative data: in-depth interviews with genetic counselors and other health professionals; observations of genetic counselors at educational conferences and workshops; and textual materials germane to the genetic counseling profession.
