@article{45b546a618d249a3ac74b12d6e321728,
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{\textquoteright} access to a participant{\textquoteright}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{\textquoteright} 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 M.} and Gordon, {Deborah R.} and Koenig, {Barbara A.} and Petersen, {Gloria M.}",
note = "Funding Information: This study emanates from a project supported by the National Institutes of Health (NIH) using mixed methods to (a) collect empirical data on sharing research results with relatives and (b) develop normative guidance on this issue, informed by the empirical work. The project has previously published an analysis of the survey data (Radecki Breitkopf et al., 2015) and consensus guidance based on ethical and legal analysis of whether and how researchers might offer a participant{\textquoteright}s genetic research results to relatives, including after participant death (Wolf et al., 2015). Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research reported in this publication was supported by the National Cancer Institute (NCI) and the National Human Genome Research Institute (NHGRI) of the National Institutes of Health under award numbers: R01CA154517, P50CA102701, R01CA97075 (NCI), P20HG007243 (NHGRI), and by UL1TR000135 from the National Center for Advancing Translational Sciences (NCATS). The funding agencies (NCI, NHGRI, NCATS) were not involved in the design of the study, the collection, analysis, or interpretation of the data, nor the writing of the manuscript. Funding Information: Carmen Radecki Breitkopf, PhD, is a psychologist and professor of health services research in the Department of Health Sciences Research at Mayo Clinic College of Medicine in Rochester, Minnesota. She is interested in behavioral and ethical aspects of participation in genetic research studies, with a particular focus on investigations involving the context of cancer; she is a co-investigator on the National Institutes of Health (NIH) grant supporting this work. She developed the survey instrument, acquired, analyzed, and interpreted the data and drafted and revised the manuscript for intellectual content. Funding Information: Susan M. Wolf, JD, is McKnight presidential professor of law, medicine, and public policy; Faegre Baker Daniels professor of law; professor of medicine; faculty member, Center for Bioethics; and chair, Consortium on Law and Values in Health, Environment & The Life Sciences at the University of Minnesota. She is one of three principal investigators on the National Institutes of Health (NIH) grant supporting this work. She contributed to survey design, interpretation of the data, and was a major contributor in writing the manuscript. Funding Information: Barbara A. Koenig, PhD, is professor of bioethics and medical anthropology based at the Institute for Health & Aging, University of California, San Francisco. Currently, she co-directs a Center of Excellence in ELSI Research focused on translational genomics, directs the ELSI component of a U19 award focused on newborn screening in an era of whole genome analysis and is one of three principal investigators on the National Institutes of Health (NIH) grant supporting this work. She developed the survey instrument, interpreted the data, and revised the manuscript critically for intellectual content. Funding Information: Gloria M. Petersen, PhD, is professor of epidemiology in the Department of Health Sciences Research at Mayo Clinic College of Medicine in Rochester, Minnesota. She is a founding fellow of the American College of Medical Genetics and Genomics, and associate director of the Population Sciences Program in the Mayo Clinic Comprehensive Cancer Center (MCCC). She co-directs the Pancreatic Cancer Specialized Program of Research Excellence (SPORE) of the MCCC and directs a research program that includes the pancreatic cancer biobank and family registry from which the study participants were accessed. She is one of three principal investigators on the National Institutes of Health (NIH) grant supporting this work. She contributed to the conception and design of the manuscript; developed the survey instrument; acquired, analyzed, and interpreted the data; and revised the manuscript critically for intellectual content.",
year = "2018",
month = jul,
day = "1",
doi = "10.1177/1556264618769165",
language = "English (US)",
volume = "13",
pages = "295--304",
journal = "Journal of Empirical Research on Human Research Ethics",
issn = "1556-2646",
publisher = "University of California Press",
number = "3",
}