Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations. Issue 3 (2015)

• Record Type: Journal Article
• Authors: Wolf, Susan M.; Branum, Rebecca; Koenig, Barbara A.; Petersen, Gloria M.; Berry, Susan A.; Beskow, Laura M.; Daly, Mary B.; Fernandez, Conrad V.; Green, Robert C.; LeRoy, Bonnie S.; Lindor, Noralane M.; O'Rourke, P. Pearl; Breitkopf, Carmen Radecki; Rothstein, Mark A.; Van Ness, Brian; Wilfond, Benjamin S.
• Is Part Of: Journal of law, medicine & ethics. Volume 43:Issue 3(2015)
• Page Start: 440
• Page End: 463
• Publication Date: 2015
• Subjects: Medical laws and legislation -- United States -- Periodicals; Medical care -- Law and legislation -- United States -- Periodicals; Medical ethics -- Periodicals; Jurisprudence -- Periodicals; Legislation, Medical -- Periodicals; Legislation, Nursing -- Periodicals; Ethics -- Periodicals; Forensic Medicine -- Periodicals; Nursing -- Periodicals; Medicine -- Periodicals; Societies -- Periodicals; Medical care -- Law and legislation; Medical ethics; Medical laws and legislation; United States; Periodicals; 344.73041
• DOI: 10.1111/jlme.12288
• Languages: English
• ISSNs: 1073-1105

Abstract

Abstract : The debate about how to manage individual research results and incidental findings in genetic and genomic research has focused primarily on what information, if any, to offer back to research participants. However, increasing controversy surrounds the question of whether researchers have any responsibility to offer a participant's results (defined here to include both individual research results and incidental findings) to the participant's relatives, including after the participant's death. This question arises in multiple contexts, including when researchers discover a result with potentially important health implications for genetic relatives, when a participant's relatives ask a researcher whether any research results about the participant have implications for their own health or reproductive planning, when a participant's relative asks whether any of the participant's results have implications for a child's health, and when the participant is deceased and the participant's relatives seek information about the participant's genetic results in order to address their own health or reproductive concerns.