Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death: Comparison of Cancer Probands, Blood Relatives, and Spouse/Partners. (July 2018)

• Record Type: Journal Article
• Authors: Radecki Breitkopf, Carmen; Wolf, Susan M.; Chaffee, Kari G.; Robinson, Marguerite E.; Lindor, Noralane M.; Gordon, Deborah R.; Koenig, Barbara A.; Petersen, Gloria M.
• Is Part Of: Journal of empirical research on human research ethics. Volume 13:Number 3(2018)
• Page Start: 295
• Page End: 304
• Publication Date: 2018-07
• Subjects: cancer biobank -- genetic research -- return of results -- biological family -- attitudes -- pancreatic cancer; Medical ethics -- Research -- Periodicals; Research -- Moral and ethical aspects -- Periodicals; 174.205
• DOI: 10.1177/1556264618769165
• Languages: English
• ISSNs: 1556-2646

Abstract

Genetic research generates results with implications for relatives. Recommendations addressing relatives' access to a participant's genetic research findings include eliciting participant preferences about access and choosing a representative to make decisions about access upon participant incapacity/death. Representatives are likely to be blood relatives or spouse/partners (who may share genetically related children). This raises the question of whether relatives hold similar attitudes about access or divergent attitudes that may yield conflict. We surveyed pancreatic cancer biobank participants (probands) and relatives in a family registry (blood relatives and spouse/partners of probands); 1, 903 (>55%) surveys were returned. Results revealed few attitudinal differences between the groups. A slightly higher proportion of blood relatives agreed with statements reflecting proband privacy. In conclusion, probands' decisions on access are likely to be accepted by relatives; in choosing a representative, probands may not face major differences in attitudes about privacy/sharing between a blood relative and a spouse/partner.