Center for Medical Ethics and Health Policy

PeopleSeq Consortium

Master
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PeopleSeq Consortium: Personal Genome Sequencing Outcomes (PeopleSeq) Consortium

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Project Description

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The PeopleSeq Consortium, funded by the NIH, is conducting a longitudinal study of healthy adults by surveying those who plan to, or have already received, their own genomic sequence information. Genomic sequencing, including genome sequencing (GS) and exome sequencing (ES), are available to and being utilized by physicians and their patients in both research and clinical settings. The use of genomic sequencing in healthy populations to screen for disease variants is conceptually different from anything practiced today in medical genetics. Instead of using genomic technology in the hopes of identifying a cause for a specific condition, genomic sequencing in healthy individuals would follow a model of “predispositional" genomic testing. Genomic sequencing of healthy individuals could grow to resemble current population-based preventative screening measures, such as newborn screening (the "heel price" test).

PeopleSeq participants have received their GS information through various commercial and research avenues, many of which follow different return of results models. Our longitudinal surveys focus on the medical, behavioral, and economic impact of performing genomic sequencing in healthy adults, and were built by drawing upon our prior experience in designing and implementing rigorous studies of the outcomes of genetic testing and results disclosure, including the Impact of Personal Genomics (PGen) Study and the MedSeq Project.

We are also conducting interviews with participants who received unanticipated disease risk results to explore the impact of this information, and participant's decision making processes, informational needs, and sharing preferences after receiving such information.

Despite the promise of genomic sequencing for personalized medicine, there remain significant challenges and concerns that must be addressed. Some consider the utilization of genomic sequencing in healthy individuals to be controversial; the short and long-term outcomes of providing genomic sequencing information to healthy adults are not yet known.

The PeopleSeq Consortium enables us to collect valuable empirical data on the medical, behavioral, and economic impact of performing genomic sequencing in healthy adults.

Supported by R01-HG009922

Participating Institutes in the PeopleSeq Consortium:

Genomes2People

PeopleSeq Scientific Team

Baylor College of Medicine

GeneDx

Genos/NantOmics

Harvard Personal Genome Project

HudsonAlpha Institute for Biotechnology

Illumina

Invitae

Mayo Clinic

Mt. Sinai School of Medicine

OpenSNP

*PerkinElmer

SoundRocket/Survey Sciences Group

University of Vermont

*Veritas Genetics

*Formal affiliation pending

See more detailed information about the PeopleSeq Consortium or email us at peopleseq@partners.org.

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Project Personnel

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Principle Investigators

Robert C. Green, M.D., MPH., Overall Co-Principal Investigator

Amy McGuire, J.D., Ph.D., Overall Co-Principal Investigator

Michael Linderman, Ph.D., Overall Co- Principal Investigator

Kurt Christensen, Ph.D., Overall Co-Principal Investigator

Center Project Personnel

Stacey Pereira, Ph.D, Co-Investigator

Jill Robinson, M.A., Research Manager

Rebecca Hsu, Research Coordinator

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Publications

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Zoltick, E.S., Linderman, M.D., McGinniss, M.A., Ramos, E., Ball, M.P., Church, G.M., Leonard, D.G., Pereira, S., McGuire, A.L., Caskey, C.T. and Sanderson, S.C., 2019. Predispositional genome sequencing in healthy adults: design, participant characteristics, and early outcomes of the PeopleSeq Consortium. Genome medicine, 11(1), p.10.

Linderman, M., Nielsen, D. and Green, R., 2016. Personal genome sequencing in ostensibly healthy individuals and the PeopleSeq Consortium. Journal of personalized medicine, 6(2), p.14.

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Presentations

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Zoltick, ES, Linderman, MD, Nielsen, DE, Betting, WN, McGinniss, MA, Ramos, E, Ball, MP, Leonard, DGB, Pereira, S, Sanderson, SS, Crawford, SD, Green, RC, the PeopleSeq Consortium. Temporal Differences in Concerns, Motivations, and Attitudes regarding Predispositional Genome Sequencing among Healthy Adults: Findings from the PeopleSeq Consortium. Poster presented at the American Society of Human Genetics Annual Meeting, October 2018, San Diego, CA.

Sutti, S, Zotick, E, Linderman, M, Nielsen, D, McGinnis, M, Ramos, E, Ball, M, Leonard, D, Pereira, S, Sanderson, S, Crawford, S, Green, RC. Participant Perspectives in Discussing Predispositional Genome Sequencing Results with Healthcare Providers: Findings from the PeopleSeq Consortium. Poster presented at the American College of Medical Genetics and Genomics Annual Meeting, April 2018, Charlotte, NC.

Zoltick, E, Linderman, M, Nielsen, D, McGinnis M, Ramos, E, Ball, M, Leonard, D, Pereira, S, Sanderson, S, Crawford, S, Green, RC. Motivations, Outcomes, and Attitudes Following Predispositional Genome Sequencing among Healthcare Professionals and Non-Healthcare Professionals: Findings from the PeopleSeq Consortium. Poster presented at the American College of Medical Genetics and Genomics Annual Meeting, April 2018, Charlotte, NC.

Green RC, Hambuch T, Ball M, Church G, Linderman M, Pearson N, Roberts JS, Sanderson S, Weipert C, Helm M, Schadt E. Predispositional Genome Sequencing in Healthy Adults: Preliminary Findings from the PeopleSeq Study. American College of Medical Genetics Annual Meeting. Salt Lake City, UT, US. March 24-28, 2015. Poster presentation.

 

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