To Know or Not to Know: Genetic Counselors, “Doing Ethics,” and the Genomic Revolution

• In Event: 118 - Regular Session. Ethics and Science

Abstract

Many social scientists and commentators have expressed concerns about the acceleration of genetic science and testing in the last few decades. While there is a growing body of work on how bench scientists view the potential of genetic technologies, there remains relatively little social science research on the personal and professional views of master’s-trained genetic counselors, a growing profession of clinicians who are often the key medical actors translating increasingly complex genetic information to patients. This study begins to fill in this lacuna by examining the perspectives of twenty-six genetic counselors in the U.S. on some of the central bioethical concerns raised by genetic testing, with a particular focus on patient autonomy an informed consent. The findings highlight some ways in which genetic counselors “do ethics” as they face contradictions between various bioethical principles. In particular, this paper shows that in providing “choice” and information, key ethical principles of science and medicine, genetic counselors perhaps ironically limit patients’ autonomy with regard to their rights not to know

Author

• Susan Markens, City University of New York-Lehman College