title: Public's Views toward Return of Secondary Results in Genomic Sequencing: It's (Almost) All about the Choice.
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.
authors.affiliation: 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. kryanz@med.umich.edu.
authors.forename: Kerry A
authors.initials: KA
authors.lastname: Ryan
authors.affiliation: 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.|Department of Learning Health Sciences, University of Michigan Medical School, Ann Arbor, MI, USA.
authors.forename: Raymond G
authors.initials: RG
authors.lastname: De Vries
authors.affiliation: 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.|Division of Molecular Medicine & Genetics, Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA.|Department of Human Genetics, University of Michigan, Ann Arbor, MI, USA.
authors.forename: Wendy R
authors.initials: WR
authors.lastname: Uhlmann
authors.affiliation: 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.|Department of Health Behavior & Health Education, School of Public Health, University of Michigan, Ann Arbor, MI, USA.
authors.forename: J Scott
authors.initials: JS
authors.lastname: Roberts
authors.affiliation: 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.|Ann Arbor Veterans Affairs Health Services Research & Development, Ann Arbor, MI, USA.
authors.forename: Michele C
authors.initials: MC
authors.lastname: Gornick
mesh_terms: D000328:Adult; D001483:Base Sequence; D002755:Choice Behavior; D030881:Disclosure / Q000706:statistics & numerical data*; D005260:Female; D005820:Genetic Testing / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D008875:Middle Aged; D011639:Public Opinion; D017422:Sequence Analysis, DNA / Q000706:statistics & numerical data*
keywords: Deliberative democracy; Disclosure of results; Ethics; Incidental findings; Participant preferences; Public policy; Qualitative analysis; Return of genomic results; Secondary results