Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families

Conrad V Fernandez; P Pearl O'Rourke; Laura M Beskow

doi:10.1111/jlme.12293

Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families

J Law Med Ethics. 2015 Fall;43(3):514-22. doi: 10.1111/jlme.12293.

Authors

Conrad V Fernandez¹, P Pearl O'Rourke², Laura M Beskow³

Affiliations

¹ Professor and Head of the Division of Pediatric Hematology/Oncology in the Department of Pediatrics, IWK Health Centre, Dalhousie University and is cross-appointed in Bioethics, Medicine and Postgraduate Studies. He obtained his Hon. B.Sc. at the University of Western Ontario, his medical degree at McMaster University, specialist certification in Pediatrics as a Fellow of the Royal College of Physicians and Surgeons of Canada at Dalhousie University, and completed specialty training in Pediatric Hematology/Oncology at the University of British Columbia.
² Director of Human Research Affairs at Partners HealthCare in Boston. She is an Associate Professor of Pediatrics at Harvard Medical School. She received her B.A. from Yale University, and completed medical school at Dartmouth Medical School and the University of Minnesota Medical School.
³ Associate Professor at the Duke University School of Medicine and Duke Clinical Research Institute, where her work focuses on ethics and policy issues in biomedical research-particularly human subjects issues in large-scale genomic and translational research. She holds a B.S. in nutrition from Iowa State University, an M.P.H. with a concentration in health law from Boston University, and a Ph.D. in health policy and administration from the University of North Carolina at Chapel Hill.

Abstract

Genomic research may uncover results that have direct actionable benefit to the individual. An emerging debate is the degree to which researchers may have responsibility to offer results to the biological relatives of the research participant. In a companion study to one carried out in the United States, we describe the attitudes of Canadian Research Ethics Board (REB) chairs to this issue and their opinions as to the role of the REB in developing related policy.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Attitude*
Canada
Disclosure / ethics*
Ethics Committees, Research / organization & administration*
Family*
Genetic Research / ethics*
Humans
Leadership*
Research Subjects*
Surveys and Questionnaires

Abstract

Publication types

MeSH terms

Grants and funding