Confidentiality in Genome Research

Abstract

The Policy Forum article “No longer de-identified” by A. L. McGuire and R. A. Gibbs (21 Apr., p. 370) discusses the importance of protecting privacy in genomic research and informing subjects of the privacy risks associated with public data-sharing in the consent process. In particular, the authors propose adopting a stratified consent process presenting three levels of confidentiality based on the number of single-nucleotide polymorphisms (SNPs) to be released. It is necessary and crucial for all subjects to be fully informed about how their DNA data may be distributed, and to decide with whom they want their data shared. However, basing the decision to release data solely on the number of SNPs and their origin in single versus multiple gene loci is inadequate. The level of privacy risks posed by SNPs is also affected by many other factors, including linkage disequilibrium (LD) patterns among SNPs and frequencies of SNPs in the population. Modest numbers of SNPs, especially those statistically independent ones, are as identifiable as social security numbers ([1][1]). Twenty statistically independent SNPs from single gene loci could pose more of a privacy threat than 75 SNPs with high LD from multiple gene loci. Even releasing eight SNPs can be risky for individuals with rare alleles, particularly if they are associated with a known phenotype. Therefore, it would be misleading to use arbitrary numbers of SNPs as a confidentiality indicator in the consent process. Nevertheless, we agree with the authors that sharing SNP data requires sufficient safeguards. Further risk assessment and strategy discussion will be needed. 1. 1.[↵][2]1. Z. Lin, 2. A. B. Owen, 3. R. B. Altman , Science 305, 183 (2004). [OpenUrl][3][Abstract/FREE Full Text][4] [1]: #ref-1 [2]: #xref-ref-1-1 View reference 1. in text [3]: {openurl}?query=rft.jtitle%253DScience%26rft.stitle%253DScience%26rft.aulast%253DLin%26rft.auinit1%253DZ.%26rft.volume%253D305%26rft.issue%253D5681%26rft.spage%253D183%26rft.epage%253D183%26rft.atitle%253DGENETICS%253A%2BGenomic%2BResearch%2Band%2BHuman%2BSubject%2BPrivacy%26rft_id%253Dinfo%253Adoi%252F10.1126%252Fscience.1095019%26rft_id%253Dinfo%253Apmid%252F15247459%26rft.genre%253Darticle%26rft_val_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Ajournal%26ctx_ver%253DZ39.88-2004%26url_ver%253DZ39.88-2004%26url_ctx_fmt%253Dinfo%253Aofi%252Ffmt%253Akev%253Amtx%253Actx [4]: /lookup/ijlink/YTozOntzOjQ6InBhdGgiO3M6MTQ6Ii9sb29rdXAvaWpsaW5rIjtzOjU6InF1ZXJ5IjthOjQ6e3M6ODoibGlua1R5cGUiO3M6NDoiQUJTVCI7czoxMToiam91cm5hbENvZGUiO3M6Mzoic2NpIjtzOjU6InJlc2lkIjtzOjEyOiIzMDUvNTY4MS8xODMiO3M6NDoiYXRvbSI7czoyNDoiL3NjaS8zMTMvNTc4Ni80NDEuMi5hdG9tIjt9czo4OiJmcmFnbWVudCI7czowOiIiO30=