Genetic Counselors, “Doing Ethics,” and the Translation of Genomic Medicine in the 21st Century

• In Event: Ethical Issues in Biomedical Research, Health Policy, and Clinical Practice – I

Abstract

Questions of whether, when, why, and for what purposes various U.S. populations will make use of new diagnostic techniques and increasingly available genetic information are increasingly important as genomic science moved from “base pairs to bedside.” These questions point to ethical, cultural and social issues that are produced and negotiated as genetic knowledge moves to, and gets translated from, the lab to the clinic. To answer such questions, this paper focuses an analytic lens on a specific “expert/user” and key translator of new genomic technologies – masters’ trained and board-certified genetic counselors. Drawing on multiple sources of qualitative data – semi-structured interviews with genetic counselors and genetic counseling program directors, observations of genetic counselors in professional settings, and textual materials germane to the education of the genetic counseling profession – this paper analyzes how the genetic counseling profession is confronting and adapting to the genomic revolution and the rapid changes this has meant for their workforce, and for patients. In so doing, this study builds on and bridges two bodies of scholarship at the interface of science, technology, knowledge, and society: 1) research primarily based in science studies focused on how knowledge is produced in the lab and how scientists confront and think about the ethical and social consequences of their work; and 2) research primarily based in social studies of medical professionals at work, examining clinicians’ socially constructed and situated identities, routines and interactions, and the dilemmas of “doing good care.”

Author

• Susan Markens, Lehman College, CUNY