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. 2009 Nov;6(6):691-699.
doi: 10.2217/pme.09.48.

Eyes wide open: the personal genome project, citizen science and veracity in informed consent

Misha Angrist  1
Affiliations

Eyes wide open: the personal genome project, citizen science and veracity in informed consent

Misha Angrist. Per Med. 2009 Nov.

Abstract

I am a close observer of the Personal Genome Project (PGP) and one of the original ten participants. The PGP was originally conceived as a way to test novel DNA sequencing technologies on human samples and to begin to build a database of human genomes and traits. However, its founder, Harvard geneticist George Church, was concerned about the fact that DNA is the ultimate digital identifier - individuals and many of their traits can be identified. Therefore, he believed that promising participants privacy and confidentiality would be impractical and disingenuous. Moreover, deidentification of samples would impoverish both genotypic and phenotypic data. As a result, the PGP has arguably become best known for its unprecedented approach to informed consent. All participants must pass an exam testing their knowledge of genomic science and privacy issues and agree to forgo the privacy and confidentiality of their genomic data and personal health records. Church aims to scale up to 100,000 participants. This special report discusses the impetus for the project, its early history and its potential to have a lasting impact on the treatment of human subjects in biomedical research.

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Figures

Figure 1
Figure 1. The PGP: how it works
For further details see [117]. PGP: Personal Genome Project.
See this image and copyright information in PMC

References

Bibliography

    1. Edelstein L. The Hippocratic Oath, Text, Translation and Interpretation. VII. The Johns Hopkins Press; MD, USA: 1943. p. 64.
    1. Katz J, Capron AM, Glass ES. Experimentation With Human Beings; the Authority of the Investigator, Subject, Professions, and State in the Human Experimentation Process. XLIX. Russell Sage Foundation; NY, USA: 1972. p. 1159.
    1. Faden RR, Beauchamp TL, King NMP. A history and theory of informed consent. XV. Oxford University Press; NY, USA: 1986. p. 392.
    1. Homer N, Szelinger S, Redman M, et al. Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLoS Genet. 2008;4:E1000167. The investigators demonstrated that individual DNA could be identified in a pool with as many as 200 other samples, thereby prompting the NIH to alter its genome-wide association study data-sharing plan. - PMC - PubMed
    1. Couzin J. Genetic privacy. Whole-genome data not anonymous, challenging assumptions. Science. 2008;321:1278. - PubMed

Websites

    1. US Department of Health and Human Services; DHHS NIH, Office Human Research Protections. Title 45: Public Welfare, Part 46: Protection of Human Subjects (aka the Common Rule) 2005 www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm.
    1. National Institute of Health. NIH Genome-Wide Association Studies Data Sharing Plan. 2007 November 27; http://grants.nih.gov/grants/gwas/gwas_data_sharing_plan.pdf.
    1. Proposal to NIH to create the Molecular and Genomic Imaging Center. 2003 http://arep.med.harvard.edu/P50_03/
    1. [Accessed 30 November 2006];American Society of Human Genetics statement on re-identification of genomic data. www.ashg.org/pages/statement_nov3006.shtml.
    1. National Institute of Health. Office of Extramural Research – NIH Town Hall Meeting; Bethesda, MD, USA. 14 December 2006; http://grants.nih.gov/grants/gwas/town_hall_mtg/index.htm.