Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death

Comparison of Cancer Probands, Blood Relatives, and Spouse/Partners

Carmen Radecki Breitkopf, Susan M. Wolf, Kari G. Chaffee, Marguerite E. Robinson, Noralane Morey Lindor, Deborah R. Gordon, Barbara A. Koenig, Gloria M Petersen

Research output: Contribution to journalArticle

1 Citation (Scopus)

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.

Original languageEnglish (US)
JournalJournal of Empirical Research on Human Research Ethics
DOIs
StateAccepted/In press - Apr 1 2018

Fingerprint

genetic research
Genetic Research
Spouses
research results
spouse
cancer
Blood
death
Neoplasms
Privacy
privacy
Pancreatic Neoplasms
Registries

Keywords

  • attitudes
  • biological family
  • cancer biobank
  • genetic research
  • pancreatic cancer
  • return of results

ASJC Scopus subject areas

  • Social Psychology
  • Education
  • Communication

Cite this

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title = "Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death: Comparison of Cancer Probands, Blood Relatives, and Spouse/Partners",
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.",
keywords = "attitudes, biological family, cancer biobank, genetic research, pancreatic cancer, return of results",
author = "{Radecki Breitkopf}, Carmen and Wolf, {Susan M.} and Chaffee, {Kari G.} and Robinson, {Marguerite E.} and Lindor, {Noralane Morey} and Gordon, {Deborah R.} and Koenig, {Barbara A.} and Petersen, {Gloria M}",
year = "2018",
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language = "English (US)",
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AU - Radecki Breitkopf, Carmen

AU - Wolf, Susan M.

AU - Chaffee, Kari G.

AU - Robinson, Marguerite E.

AU - Lindor, Noralane Morey

AU - Gordon, Deborah R.

AU - Koenig, Barbara A.

AU - Petersen, Gloria M

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N2 - 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.

AB - 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.

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