%0 Journal Article
%@ 1756-994X
%A Zoltick, ES
%A Linderman, MD
%A McGinniss, MA
%A Ramos, E
%A Ball, MP
%A Church, GM
%A Leonard, DGB
%A Pereira, S
%A McGuire, AL
%A Caskey, CT
%A Sanderson, SC
%A Schadt, EE
%A Nielsen, DE
%A Crawford, SD
%A Green, RC
%D 2019
%F discovery:10075617
%I BMC
%J Genome Medicine
%K Science & Technology, Life Sciences & Biomedicine, Genetics & Heredity, Personal genome sequencing, Return of results, Genomics, Test utility, Public health, PRIMARY-CARE PROVIDERS, CONSUMER PERCEPTIONS, CLINICAL EXOME, RISK, RECOMMENDATIONS, INTEGRATION, MEDICINE, SERVICES, BARRIERS, GENETICS
%T Predispositional genome sequencing in healthy adults: design, participant characteristics, and early outcomes of the PeopleSeq Consortium
%U https://discovery.ucl.ac.uk/id/eprint/10075617/
%V 11
%X Background: Increasing numbers of healthy individuals are undergoing predispositional personal genome  sequencing. Here we describe the design and early outcomes of the PeopleSeq Consortium, a multi-cohort  collaboration of predispositional genome sequencing projects, which is examining the medical, behavioral, and  economic outcomes of returning genomic sequencing information to healthy individuals.  Methods: Apparently healthy adults who participated in four of the sequencing projects in the Consortium were  included. Web-based surveys were administered before and after genomic results disclosure, or in some cases only  after results disclosure. Surveys inquired about sociodemographic characteristics, motivations and concerns, behavioral  and medical responses to sequencing results, and perceived utility.  Results: Among 1395 eligible individuals, 658 enrolled in the Consortium when contacted and 543 have completed a  survey after receiving their genomic results thus far (mean age 53.0 years, 61.4% male, 91.7% white, 95.5% college  graduates). Most participants (98.1%) were motivated to undergo sequencing because of curiosity about their genetic  make-up. The most commonly reported concerns prior to pursuing sequencing included how well the results would  predict future risk (59.2%) and the complexity of genetic variant interpretation (56.8%), while 47.8% of participants were  concerned about the privacy of their genetic information. Half of participants reported discussing their genomic results  with a healthcare provider during a median of 8.0 months after receiving the results; 13.5% reported making an  additional appointment with a healthcare provider specifically because of their results. Few participants (< 10%)  reported making changes to their diet, exercise habits, or insurance coverage because of their results. Many  participants (39.5%) reported learning something new to improve their health that they did not know before.  Reporting regret or harm from the decision to undergo sequencing was rare (< 3.0%).  Conclusions: Healthy individuals who underwent predispositional sequencing expressed some concern around  privacy prior to pursuing sequencing, but were enthusiastic about their experience and not distressed by their results.  While reporting value in their health-related results, few participants reported making medical or lifestyle changes.
%Z This article is distributed under the terms of the Creative Commons Attribution 4.0  International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and  reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to  the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver  (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.