Motivations, concerns and preferences of personal genome sequencing research participants

Baseline findings from the HealthSeq project

Saskia C. Sanderson, Michael D. Linderman, Sabrina A. Suckiel, George A. Diaz, Randi E. Zinberg, Kadija Ferryman, Melissa P. Wasserstein, Andrew Kasarskis, Eric E. Schadt

Research output: Contribution to journalArticle

36 Citations (Scopus)

Abstract

Whole exome/genome sequencing (WES/WGS) is increasingly offered to ostensibly healthy individuals. Understanding the motivations and concerns of research participants seeking out personal WGS and their preferences regarding return-of-results and data sharing will help optimize protocols for WES/WGS. Baseline interviews including both qualitative and quantitative components were conducted with research participants (n=35) in the HealthSeq project, a longitudinal cohort study of individuals receiving personal WGS results. Data sharing preferences were recorded during informed consent. In the qualitative interview component, the dominant motivations that emerged were obtaining personal disease risk information, satisfying curiosity, contributing to research, self-exploration and interest in ancestry, and the dominant concern was the potential psychological impact of the results. In the quantitative component, 57% endorsed concerns about privacy. Most wanted to receive all personal WGS results (94%) and their raw data (89%); a third (37%) consented to having their data shared to the Database of Genotypes and Phenotypes (dbGaP). Early adopters of personal WGS in the HealthSeq project express a variety of health- and non-health-related motivations. Almost all want all available findings, while also expressing concerns about the psychological impact and privacy of their results.

Original languageEnglish (US)
Pages (from-to)14-20
Number of pages7
JournalEuropean Journal of Human Genetics
Volume24
Issue number1
DOIs
StatePublished - Jan 1 2016
Externally publishedYes

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Motivation
Information Dissemination
Privacy
Genome
Research
Interviews
Psychology
Exome
Exploratory Behavior
Informed Consent
Longitudinal Studies
Cohort Studies
Genotype
Databases
Phenotype
Health

ASJC Scopus subject areas

  • Genetics(clinical)
  • Genetics

Cite this

Sanderson, S. C., Linderman, M. D., Suckiel, S. A., Diaz, G. A., Zinberg, R. E., Ferryman, K., ... Schadt, E. E. (2016). Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project. European Journal of Human Genetics, 24(1), 14-20. https://doi.org/10.1038/ejhg.2015.118

Motivations, concerns and preferences of personal genome sequencing research participants : Baseline findings from the HealthSeq project. / Sanderson, Saskia C.; Linderman, Michael D.; Suckiel, Sabrina A.; Diaz, George A.; Zinberg, Randi E.; Ferryman, Kadija; Wasserstein, Melissa P.; Kasarskis, Andrew; Schadt, Eric E.

In: European Journal of Human Genetics, Vol. 24, No. 1, 01.01.2016, p. 14-20.

Research output: Contribution to journalArticle

Sanderson, Saskia C. ; Linderman, Michael D. ; Suckiel, Sabrina A. ; Diaz, George A. ; Zinberg, Randi E. ; Ferryman, Kadija ; Wasserstein, Melissa P. ; Kasarskis, Andrew ; Schadt, Eric E. / Motivations, concerns and preferences of personal genome sequencing research participants : Baseline findings from the HealthSeq project. In: European Journal of Human Genetics. 2016 ; Vol. 24, No. 1. pp. 14-20.
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