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Preferences regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank

Published online by Cambridge University Press:  01 January 2021

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

Biobank data and samples frequently endure beyond the life of the individual who provided the sample; this is particularly true for biorepositories that archive data and samples from cancer patients. Those data and samples may be used for research, including after the death of the individual. When the research produces genetic research results (a term used here to include incidental findings and individual research results) that have potential health or reproductive importance for the individual who provided the sample, the results may also have importance for blood relatives. This raises the question of whether the research results should be shared with relatives, at their request or at the initiative of the researchers. The issues are complex even when the research participant is alive, but are particularly challenging after the death of the individual whose data and sample are archived, as the individual may not have been asked their preferences about sharing with family, including after death. Even if the individual’s preferences on sharing have been elicited, investigators and biobank directors may be concerned about withholding genetic research results from relatives that are of potential health significance.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 43 , Issue 3 , Autumn 2015 , pp. 464 - 475
Copyright
Copyright © American Society of Law, Medicine and Ethics 2015

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References

Milner, L. C. et al. , “Relationships Matter: Ethical Considerations for Returning Results to Family Members of Deceased Subjects,” American Journal of Bioethics 13, no. 10 (2013): 66–67; Rothstein, M. A., “Disclosing Decedents' Research Results to Relatives Violates the HIPAA Privacy Rule,” American Journal of Bioethics 12, no. 10 (2012): 16–17; Black, L. McClellan, K. A., “Familial Communication of Research Results: A Need to Know?” Journal of Law, Medicine & Ethics 39, no. 4 (2011): 605–613; Tassé, A. M., “The Return of Results of Deceased Research Participants,” Journal of Law, Medicine & Ethics 39, no. 4 (2011): 621–630.CrossRefGoogle Scholar
See Amendola, L. M. et al. , “Patient's Choices for Return of Exome and Genome Sequencing Results to Relatives in the Event of their Death,” Journal of Law, Medicine & Ethics 43, no. 3 (2015): 476–485.Google Scholar
Allen, N. L. et al. , “Biobank Participants' Preferences for Disclosure of Genetic Research Results: Perspectives from the OurGenes, OurHealth, OurCommunity Project,” Mayo Clinic Proceedings 89, no. 6 (2014): 738–746.CrossRefGoogle Scholar
Amendola, et al. , supra note 2; Bollinger, J. M. et al. , “Public Preferences Regarding the Return of Individual Genetic Research Results: Findings from a Qualitative Focus Group Study,” Genetics in Medicine 14, no. 4 (2012): 451–457; Meulenkamp, T. M. et al. , “Communication of Biobanks' Research Results: What Do (Potential) Participants Want?” American Journal of Medical Genetics 152 Part A, no. 10 (2010): 2482–2492; Murphy, J. et al. , “Public Expectations for Return of Results from Large-Cohort Genetic Research,” American Journal of Bioethics 8, no. 11 (2008): 36–43.Google Scholar
See Wolf, S. M. et al. , “Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations,” Journal of Law, Medicine & Ethics 43, no. 3 (2015): 440–463.CrossRefGoogle Scholar
Howell, L. A. et al. , “Receptivity and Preferences of Pancreatic Cancer Family Members for Participating in Lifestyle Programs to Reduce Cancer Risk,” Hereditary Cancer in Clinical Practice 11, no. 1 (2013): 3 (9 pages); Radecki Breitkopf, C. et al. , “Factors Influencing Receptivity to Future Screening Options for Pancreatic Cancer in Those With and Without Pancreatic Cancer Family History,” Hereditary Cancer in Clinical Practice 10, no. 1 (2012): 8 (9 pages); Hruban, R. H. et al. , “Update on Familial Pancreatic Cancer,” Advances in Surgery 44 (2010): 293–311; Petersen, G. M. et al. , “Pancreatic Cancer Genetic Epidemiology Consortium,” Cancer, Epidemiology, Biomarkers and Prevention 15, no. 4 (2006): 704–710.CrossRefGoogle Scholar
Zhen, D. B. et al. , “BRCA1, BRCA2, PALB2, and CDKN2A Mutations in Familial Pancreatic Cancer: A PACGENE Study,” Genetics in Medicine, 17, no. 7 (2015): 569–577.CrossRefGoogle Scholar
Grant, R. C. et al. , “Prevalence of Germline Mutations in Cancer Predisposition Genes in Patients with Pancreatic Cancer,” Gastroenterology 148, no. 3 (2015): 556–564; McWilliams, R. R. et al. , “Prevalence of CDKN2A Mutations in Pancreatic Cancer Patients: Implications for Genetic Counseling,” European Journal of Human Genetics 19, no. 4 (2011): 472–478.CrossRefGoogle Scholar
McWilliams, R. R. et al. , “Nucleotide Excision Repair Pathway Polymorphisms and Pancreatic Cancer Risk: Evidence for Role of MMS19L,” Cancer, Epidemiology, Biomarkers & Prevention 18, no. 4 (2009): 1295–1302.Google Scholar
Koenig, B. A. et al. , “Returning ‘Actionable’ Results to Family Members in a Pancreatic Cancer Biobank” (Session #25), Presented at the 62nd Annual Meeting of the American Society of Human Genetics, November 8, 2012, San Francisco, CA.Google Scholar
Gray, S. W. et al. , “Social and Behavioral Research in Genomic Sequencing: Approaches from the Clinical Sequencing Exploratory Research Consortium Outcomes and Measures Working Group,” Genetics in Medicine 16, no. 10 (2014): 727–735.Google Scholar
Holland, B. S. Copenhaver, M. D., “Improved Bonferroni-Type Multiple Testing Procedures,” Psychological Bulletin 104, no. 1 (1988): 145–149; Holm, S., “A Simple Sequentially Rejective Multiple Test Procedure,” Scandinavian Journal of Statistics 6, no. 2 (1979): 65–70.Google Scholar
Koenig, B. A. et al. , “Returning Incidental Findings to Family Members of Deceased Research Participants: Perspectives from a Cancer Biobank,” (Program #2360M), Presented at the 64th Annual Meeting of the American Society of Human Genetics, October 20, 2014, San Diego, CA; Koenig, B. A. et al. , “Should Return of ‘Incidental Findings’ Include Family Members of Deceased Research Participants? Findings from a Cancer Biobank,” Presented at the 16th Annual Meeting of the American Society for Bioethics and Humanities, October 17, 2014, San Diego, CA.Google Scholar
The American Association for Public Opinion Research, Standard Definitions: Final Dispositions of Case Codes and Outcome Rates for Surveys, 7th ed. (Deerfield, IL: American Association for Public Opinion Research, 2011).Google Scholar
Bollinger, J. M. et al. , “Public Preferences Regarding the Return of Individual Genetic Research Results: Findings from a Qualitative Focus Group Study,” Genetics in Medicine 14, no. 4 (2012): 451–457; see Meulenkamp, et al. , supra note 4; Murphy, et al. , supra note 4.CrossRefGoogle Scholar
Amendola, et al. , supra note 2.Google Scholar