J Empir Res Hum Res Ethics. 2018 Apr 1:1556264618769165. doi: 10.1177/1556264618769165. [Epub ahead of print]
Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death: Comparison of Cancer Probands, Blood Relatives, and Spouse/Partners.
Radecki Breitkopf C1, Wolf SM2, Chaffee KG1, Robinson ME1, Lindor NM3, Gordon DR4, Koenig BA4, Petersen GM1.
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.
attitudes; biological family; cancer biobank; genetic research; pancreatic cancer; return of results