NCI think tank concerning the identifiability of biospecimens and "omic" data

Genetics in Medicine

Volumn 15, Issue 12, 2013, Pages 997-1003

  Weil, Carol J ^a   Mechanic, Leah E ^a   Green, Tiffany ^a   Kinsinger, Christopher ^a   Lockhart, Nicole C ^b   Nelson, Stefanie A ^a   Rodriguez, Laura L ^b   Buccini, Laura D ^a,c  

^a NATIONAL CANCER INSTITUTE   (United States)

^b NATIONAL HUMAN GENOME RESEARCH INSTITUTE   (United States)

^c LERNER RESEARCH INSTITUTE   (United States)

Author keywords

biospecimens; data sharing; identifiability; research participant engagement

Indexed keywords

ARTICLE; BIOINFORMATICS; BIOTECHNOLOGY; CANCER GENETICS; COMMERCIAL GENETICS; EMPIRICAL RESEARCH; GENETIC PRIVACY; GENETIC SCREENING; GENETICS; GENOMICS; HUMAN; HUMAN GENETICS; HUMAN GENOME; NATIONAL HEALTH ORGANIZATION; PATIENT ADVOCACY; PHENOTYPE; PROTECTION; PROTEOMICS; SCIENCE;

CONFIDENTIALITY; GENETIC PRIVACY; GENOMICS; HUMANS; INFORMATION DISSEMINATION; NATIONAL CANCER INSTITUTE (U.S.); PATIENT ADVOCACY; UNITED STATES;

EID: 84890089888     PISSN: 10983600     EISSN: 15300366     Source Type: Journal    
DOI: 10.1038/gim.2013.40     Document Type: Article

References (19)

1. National Institutes of Health. NOT-OD-07-088: Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies (GWAS). http://grants.nih.gov/grants/guide/notice-files/NOT-OD-07-088.html 2007
2. National Institutes of Health. NOT-HG-10-006 Notice on Development of Data Sharing Policy for Sequence and Related Genomic Data. http://grants.nih. gov/ grants/guide/notice-files/NOT-HG-10-006.html 2009
3. 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
4. Schadt EE, Woo S, Hao K. Bayesian method to predict individual SNP genotypes from gene expression data. Nat Genet 2012;44:603-608
5. Im Hae K, Gamazon ER, Nicolae DL, Cox NJ. On sharing quantitative trait GWAS results in an era of multiple-omics data and the limits of genomic privacy. Am J Hum Genet 2012;90:591-598
6. Lin Z, Owen AB, Altman RB. Genetics. Genomic research and human subject privacy. Science 2004;305:183
7. Gymrek M, McGuire AL, Golan D, Halperin E, Erlich Y. Identifying personal genomes by surname inference. Science 2013;339:321-324
8. Department of Health and Human Services. Human subjects research protections: Enhancing protections for research subjects and reducing burden, delay and ambiguity for investigators. In: Department of Health and Human Services (ed). Federal Register, vol. 76; 2011: 44512-44531
9. Department of Health and Human Services. Subpart A: Responsibility of PHS Awardee and Applicant Institutions for dealing with and reporting possible misconduct in science. 45 CFR 50 Subpart A.
10. Presidential Commission for the Study of Bioethical Issues. Privacy and progress in whole genome sequencing. Department of Health and Human Services. Washington, DC, 2012. http://bioethics.gov/cms/sites/default/files/ PrivacyProgress 508 1.pdf
11. Schadt EE. The changing privacy landscape in the era of big data. Mol Syst Biol 2012;8:612
12. Ohm P. Broken promises of privacy: Responding to the surprising failure of anonymization. UCLA Law Rev 2009;57:1701
13. Ormond KE, Cirino AL, Helenowski IB, Chisholm RL, Wolf WA. Assessing the understanding of biobank participants. Am J Med Genet A 2009; 149A:188-198
14. Hobbs A, Starkbaum J, Gottweis U, Wichmann HE, Gottweis H. The privacyreciprocity connection in biobanking: Comparing German with UK strategies. Public Health Genomics 2012;15:272-284
15. McGuire AL, Oliver JM, Slashinski MJ, et al. To share or not to share: A randomized trial of consent for data sharing in genome research. Genet Med 2011;13:948-955
16. Oliver JM, Slashinski MJ, Wang T, Kelly PA, Hilsenbeck SG, McGuire AL. Balancing the risks and benefits of genomic data sharing: Genome research participants' perspectives. Public Health Genomics 2012;15:106-114
17. Kohane IS, Mandl KD, Taylor PL, Holm IA, Nigrin DJ, Kunkel LM. Medicine. Reestablishing the researcher-patient compact. Science 2007;316: 836-837
18. Trinidad SB, Fullerton SM, Ludman EJ, Jarvik GP, Larson EB, Burke W. Research ethics. Research practice and participant preferences: The growing gulf. Science 2011;331:287-288
19. Lowrance WW, Collins FS. Ethics. Identifiability in genomic research. Science 2007;317:600-602