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 language | English (US) |
|---|---|
| Journal | Journal of Empirical Research on Human Research Ethics |
| DOIs | |
| State | Accepted/In press - Apr 1 2018 |
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Keywords
- attitudes
- biological family
- cancer biobank
- genetic research
- pancreatic cancer
- return of results
ASJC Scopus subject areas
- Social Psychology
- Education
- Communication
Cite this
Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death : Comparison of Cancer Probands, Blood Relatives, and Spouse/Partners. / Radecki Breitkopf, Carmen; Wolf, Susan M.; Chaffee, Kari G.; Robinson, Marguerite E.; Lindor, Noralane Morey; Gordon, Deborah R.; Koenig, Barbara A.; Petersen, Gloria M.
In: Journal of Empirical Research on Human Research Ethics, 01.04.2018.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death
T2 - Comparison of Cancer Probands, Blood Relatives, and Spouse/Partners
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
PY - 2018/4/1
Y1 - 2018/4/1
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.
KW - attitudes
KW - biological family
KW - cancer biobank
KW - genetic research
KW - pancreatic cancer
KW - return of results
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UR - http://www.scopus.com/inward/citedby.url?scp=85046690960&partnerID=8YFLogxK
U2 - 10.1177/1556264618769165
DO - 10.1177/1556264618769165
M3 - Article
JO - Journal of Empirical Research on Human Research Ethics
JF - Journal of Empirical Research on Human Research Ethics
SN - 1556-2646
ER -