Questioning the limits of genomic privacy

American Journal of Human Genetics

Volumn 91, Issue 3, 2012, Pages 577-578

  Knoppers, Bartha M ^a   Dove, Edward S ^a   Litton, Jan Eric ^b   Nietfeld, J J ^c  

^a MCGILL UNIVERSITY   (Canada)

^b KAROLINSKA INSTITUTE   (Sweden)

^c UNIVERSITY MEDICAL CENTER UTRECHT   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

GENOMICS; GOVERNMENT REGULATION; HEALTH CARE POLICY; LETTER; MEDICAL INFORMATION; MEDICAL RESEARCH; MEDICOLEGAL ASPECT; PHENOTYPE; PRIORITY JOURNAL;

EID: 84866100941     PISSN: 00029297     EISSN: 15376605     Source Type: Journal    
DOI: 10.1016/j.ajhg.2012.05.027     Document Type: Letter

References (22)

1. Im, H.K., Gamazon, E.R., Nicolae, D.L., and Cox, N.J. (2012). On sharing quantitative trait GWAS results in an era of multiple-omics data and the limits of genomic privacy. Am. J. Hum. Genet. 90, 591-598.
2. Craig, D.W., Goor, R.M.,Wang, Z., Paschall, J., Ostell, J., Feolo, M., Sherry, S.T., and Manolio, T.A. (2011). Assessing and managing risk when sharing aggregate genetic variant data. Nat. Rev. Genet. 12, 730-736.
3. Schmidt, H., and Callier, S. (2012). How anonymous is 'anonymous'? Some suggestions towards a coherent universal coding system for genetic samples. J. Med. Ethics 38, 304-309.
4. Ohm, P. (2010). Broken promises of privacy: Responding to the surprising failure of anonymization. UCLA Law Rev. 57, 1701-1777.
5. Sa'ndor, J., and Ba'rd, P. (2011). The question of anonymity and privacy in biobanking. In Biobanks and Tissue Research: The Public, the Patient and the Regulation, C. Lenk, J. Sa'ndor, and B. Gordijn, eds. (New York: Springer), pp. 213-230.
6. European Commission (2012). Proposal for a regulation of the European Parliament and of the council on the protection of individuals with regard to the processing of personal data and on the free movement of such data. EC's proposal, http://ec.europa.eu/justice/data-protection/document/review2012/com- 2012-11-en.pdf.
7. Council of the European Union (2012). Revised proposal for a regulation of the European Parliament and of the council on the protection of individuals with regard to the processing of personal data and on the free movement of such data. Council's revised proposal, http://www.statewatch.org/news/ 2012/jun/eu-council-revised-dp-position-11326-12.pdf.
8. Health Insurance Portability and Accountability Act of 1996 (HIPAA). U.S. 45 C.F.R. x 160.103.
9. Knoppers, B.M., and Saginur, M. (2005). The Babel of genetic data terminology. Nat. Biotechnol. 23, 925-927.
10. Article29Working Party (2007).Opinion4/2007onthe concept of personal data. Working party opinion, http://ec.europa.eu/ justice/policies/privacy/docs/ wpdocs/2007/wp136-en.pdf.
11. Nietfeld, J.J. (2007). What is anonymous? EMBO Rep. 8, 518. (Pubitemid 47214699)
12. Malin, B., Loukides, G., Benitez, K., and Clayton, E.W. (2011). Identifiability in biobanks: Models, measures, and mitigation strategies. Hum. Genet. 130, 383-392.
13. Masiello, B., and Whitten, A. (2010). Engineering privacy in an age of information abundance. AAAI Spring Symposium Series 119-124, https://www.aaai.org/ocs/index.php/ SSS/SSS10/paper/view/1188/1497.
14. El Emam, K., Jonker, E., Arbuckle, L., and Malin, B. (2011). A systematic review of re-identification attacks on health data. PLoS ONE 6, e28071.
15. Malin, B., Karp, D., and Scheuermann, R.H. (2010). Technical and policy approaches to balancing patient privacy and data sharing in clinical and translational research. J. Investig. Med. 58, 11-18.
16. Tene, O. (2011). The complexities of defining personal data: Anonymization. Data Prot. Law Policy 8, 6-7.
17. Tene, O., and Polonetsky, J. (2012). Privacy in the age of big data: A time for big decisions. Stanford Law Rev. Online 64, 63-69.
18. Murtagh, M.J., Demir, I., Jenkings, K.N., Wallace, S.E., Murtagh, B., Boniol, M., Bota, M., Laflamme, P., Boffetta, P., Ferretti, V., and Burton, P.R. (2012). Securing the data economy: Translating privacy and enacting security in the development of DataSHIELD. Public Health Genomics 15, 243-253.
19. Ohno-Machado, L., Bafna, V., Boxwala, A.A., Chapman, B.E., Chapman,W.W., Chaudhuri, K., Day, M.E., Farcas, C., Heintzman, N.D., Jiang, X., et al; iDASH Team. (2012). iDASH: Integrating data for analysis, anonymization, and sharing. J. Am. Med. Inform. Assoc. 19, 196-201.
20. Nietfeld, J.J., Sugarman, J., and Litton, J.E. (2011). The Bio-PIN: A concept to improve biobanking. Nat. Rev. Cancer 11, 303-308.
21. Joly, Y., Dove, E.S., Knoppers, B.M., Bobrow, M., and Chalmers, D. (2012). Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO). PLoS Comput. Biol. 8, e1002549.
22. Heeney, C., Hawkins, N., de Vries, J., Boddington, P., and Kaye, J. (2011). Assessing the privacy risks of data sharing in genomics. Public Health Genomics 14, 17-25.