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Public’s Views toward Return of Secondary Results in Genomic Sequencing: It’s (Almost) All about the Choice

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

The therapeutic use of genomic sequencing creates novel and unresolved questions about cost, clinical efficacy, access, and the disclosure of sequencing results. The disclosure of the secondary results of sequencing poses a particularly challenging ethical problem. Experts disagree about which results should be shared and public input – especially important for the creation of disclosure policies – is complicated by the complex nature of genetics. Recognizing the value of deliberative democratic methods for soliciting informed public opinion on matters like these, we recruited participants from a clinical research site for an all-day deliberative democracy (DD) session. Participants were introduced to the clinical and ethical issues associated with genomic sequencing, after which they discussed the tradeoffs and offered their opinions about policies for the return of secondary results. Participants (n = 66; mean age = 57 (SD = 15); 70% female; 76% white) were divided into 10 small groups (5 to 8 participants each) allowing interactive deliberation on policy options for the return of three categories of secondary results: 1) medically actionable results; 2) risks for adult-onset disorders identified in children; and 3) carrier status for autosomal recessive disorders. In our qualitative analysis of the session transcripts, we found that while participants favored choice and had a preference for making information available, they also acknowledged the risks (and benefits) of learning such information. Our research reveals the nuanced reasoning used by members of the public when weighing the pros and cons of receiving genomic information, enriching our understanding of the findings of surveys of attitudes regarding access to secondary results.

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Acknowledgements

The authors would like to thank all of the individuals who participated in this study, as well as the external advisors, DD session facilitators, and presenters. We would also like to thank postdoctoral research fellows, Aaron Scherer, PhD and Kayte Spector-Bagdady, JD, MBioethics for revisions to the coding scheme and assistance in qualitative coding. The work was supported by the National Human Genome Research Institute Clinical Sequencing Exploratory Research Consortium grant 1UM1HG006508. The sponsor had no role in the study design, collection, analysis, or interpretation of data; writing of the report; or the decision to submit paper for publication. The ideas and opinions expressed in this paper do not represent any position or policy of the National Institutes of Health, the Department of Health and Human Services, or the U.S. government.

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Authors and Affiliations

  1. Center for Bioethics and Social Sciences in Medicine, Department of Internal Medicine, University of Michigan, 2800 Plymouth Road, Building 14, G016, Ann Arbor, MI, 48109-2800, USA

    Kerry A. Ryan, Raymond G. De Vries, Wendy R. Uhlmann, J. Scott Roberts & Michele C. Gornick

  2. Department of Learning Health Sciences, University of Michigan Medical School, Ann Arbor, MI, USA

    Raymond G. De Vries

  3. Division of Molecular Medicine & Genetics, Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA

    Wendy R. Uhlmann

  4. Department of Human Genetics, University of Michigan, Ann Arbor, MI, USA

    Wendy R. Uhlmann

  5. Department of Health Behavior & Health Education, School of Public Health, University of Michigan, Ann Arbor, MI, USA

    J. Scott Roberts

  6. Ann Arbor Veterans Affairs Health Services Research & Development, Ann Arbor, MI, USA

    Michele C. Gornick

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  1. Kerry A. Ryan
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Correspondence to Kerry A. Ryan.

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Kerry Ryan, Raymond De Vries, Wendy Uhlmann, J. Scott Roberts, and Michele Gornick declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures performed in studies involved human participants were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). This study was deemed exempt from federal regulations by the University of Michigan’s Institutional Review Board.

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Ryan, K.A., De Vries, R.G., Uhlmann, W.R. et al. Public’s Views toward Return of Secondary Results in Genomic Sequencing: It’s (Almost) All about the Choice. J Genet Counsel 26, 1197–1212 (2017). https://doi.org/10.1007/s10897-017-0095-6

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