Standard Grant: Genetic Counselors and the Ethics of Translating Genomic Science

Research Foundation Of The City University Of New York (Lehman), Bronx NY

Investigators

Abstract

This proposed research will explore how genetic counselors are bridging the world of science and the clinic in their role of providing information to the public on genetic science. By asking what genetic counselors consider to be the nuances and goals of their professional responsibilities, this proposed study will identify the tensions of genetic counseling and ethical aspects of translating genetic science to users. Findings of this proposed study will be of interest to researchers, policymakers, genetic counselors, medical community, and the general public. It will further scientific and public understandings of what counts as legitimate expertise and knowledge. It will identify processes to improve the public's uptake of science. In addition, it will contribute to understanding how to ground abstract bioethical principles in everyday encounters and to prepare professionals to respond to the ethical dilemmas of translating genetic knowledge and technologies. Utilizing a multi-sited qualitative research approach, this proposed research draws on data from in-depth interviews, observations, and textual documents. It will bridge and blend existing science studies scholarship on scientists' research practices in the lab with analysis of practitioners' everyday decision-making in the clinic. In so doing, the proposed study uses concepts of ethical work, boundary making, and knowledge production to exam medical care in the clinic. By focusing on genetic counselors whose specific role is to provide information in order to facilitate individual decisions and expectations, this proposed study will analyze genetic counselors' assessment of their role in translating genetic knowledge and its consequences. It will develop a framework through which to analyze other meso-level professions engaged in translational medicine.