Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences

Deborah R. Gordon, Carmen Radecki Breitkopf, Marguerite Robinson, Wesley O. Petersen, Jason S. Egginton, Kari G. Chaffee, Gloria M. Petersen, Susan M. Wolf, Barbara A. Koenig

Research output: Contribution to journalArticlepeer-review

5 Scopus citations

Abstract

Background: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands’ biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband’s results to family members, including after the proband’s death? Methods: Preferences were elicited using interviews and a survey. Respondents included probands from two pancreatic cancer research resources, plus biological and nonbiological family members. Hypothetical scenarios based on actual research findings from the two cancer research resources were presented; participants were asked return of results preferences and justifications. Interview transcripts were coded and analyzed; survey data were analyzed descriptively. Results: Fifty-one individuals (17 probands, 21 biological relatives, 13 spouses/partners) were interviewed. Subsequently, a mailed survey was returned by 464 probands, 1,040 biological family members, and 399 spouses/partners. This analysis highlights the interviews, augmented by survey findings. Probands and family members attribute great predictive power and lifesaving potential to genomic information. A majority hold that a proband’s genomic results relevant to family members’ health ought to be offered. While informants endorse each individual’s choice whether to learn results, most express a strong moral responsibility to know and to share, particularly with the younger generation. Most have few concerns about sharing genetic information within the family; rather, their concerns focus on the health consequences of not sharing. Conclusions: Although additional studies in diverse populations are needed, policies governing return of genomic results should consider how families understand genomic data, how they value confidentiality within the family, and whether they endorse an ethics of sharing. A focus on respect for individual privacy—without attention to how the broad social and cultural context shapes preferences within families—cannot be the sole foundation of policy.

Original languageEnglish (US)
Pages (from-to)1-22
Number of pages22
JournalAJOB Empirical Bioethics
Volume10
Issue number1
DOIs
StatePublished - Jan 2 2019

Bibliographical note

Funding Information:
Preparation of this article was supported by the National Cancer Institute (NCI) and National Human Genomic Research Institute (NHGRI) grant R01 CA154517 (G. Petersen, Koenig, Wolf, PIs). The PIs participated in the Clinical Sequencing Exploratory Research (CSER) Consortium supported by NHGRI and NCI. Additional support was provided by the NHGRI Center of Excellence in ELSI Research grant P20 HG007243 (Koenig, Somkin, PIs). The Mayo Clinic pancreatic cancer patient biobank and family research registry are supported by P50 CA102701 and R01 CA97075 (G. Petersen, PI). All views expressed are those of the authors and do not necessarily reflect the views of NIH or the CSER Consortium.

Funding Information:
To inform policy about these questions, we conducted a mixed-methods study to elicit the RoR preferences of probands and a sample of biological and nonbiological family members of probands. The qualitative component of the study—based on in-depth interviews—informed the development of a survey that was mailed to living probands with pancreatic cancer and family members of living and deceased probands with the disease (Radecki Breitkopf et al. 2015). Together these studies constituted the empirical research component of a 5-year project funded by the National Institutes of Health (NIH) on RoR to

Funding Information:
Preparation of this article was supported by the National Cancer Institute (NCI) and National Human Genomic Research Institute (NHGRI) grant R01 CA154517 (G. Petersen, Koenig, Wolf, PIs). The PIs participated in the Clinical Sequencing Exploratory Research (CSER) Consortium supported by NHGRI and NCI. Additional support was provided by the NHGRI Center of Excellence in ELSI Research grant P20 HG007243 (Koenig, Somkin, PIs). The Mayo Clinic pancreatic cancer patient biobank and family research registry are supported by P50 CA102701 and R01 CA97075 (G. Petersen, PI). All views expressed are those of the authors and do not necessarily reflect the views of NIH or the CSER Consortium. The authors thank the Mayo Clinic biobank participants and family members who graciously agreed to be interviewed and complete surveys. We also thank the RAPPORT pancreatic cancer advocacy group for helping with pilot design. We are grateful to the following for assistance with article preparation and data analysis: Katherine Humeniuk, Krista Sigurdson, Jaennika Aniag, Lindsay Forbes, Matthew Norstad, and Jeremy Michelson.

Publisher Copyright:
© 2018, © 2018 Taylor & Francis Group, LLC.

Keywords

  • Return of results
  • ethics of disclosure
  • family communication
  • genomics
  • incidental findings

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