Public perspectives regarding data-sharing practices in genomics research

Public Health Genomics

Volumn 14, Issue 6, 2011, Pages 319-324

  Haga, S B ^a   O'Daniel, J ^a  

^a DUKE UNIVERSITY   (United States)

Author keywords

Data sharing; Genomics research; Public attitudes

Indexed keywords

ADULT; CONFIDENTIALITY; CONTROLLED STUDY; FEMALE; GENETIC DATABASE; GENETIC PRIVACY; GENOMICS; HUMAN; HUMAN EXPERIMENT; INFORMATION RETRIEVAL; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; MALE; NORMAL HUMAN; PARTICIPANT OBSERVATION; PRIORITY JOURNAL; PUBLIC OPINION; REVIEW; UNITED STATES;

ADULT; AFRICAN AMERICANS; ATTITUDE TO HEALTH; COMMUNICATION; CONFIDENTIALITY; DATABASES, FACTUAL; FEMALE; FOCUS GROUPS; GENOMICS; HUMANS; INFORMATION DISSEMINATION; MALE; NORTH CAROLINA; PRIVACY; PUBLIC HEALTH; SOCIAL CLASS;

EID: 80053386296     PISSN: 16624246     EISSN: 16628063     Source Type: Journal    
DOI: 10.1159/000324705     Document Type: Review

References (30)

1. Homer N, Szelinger S, Redman M, Duggan D, Tembe W, Muehling J, Pearson JV, Stephan DA, Nelson SF, Craig DW: Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLoS Genet 2008; 4:e1000167.
2. Lin Z, Owen AB, Altman RB: Genetics. Genomic research and human subject privacy. Science 2004; 305: 183. (Pubitemid 38886715)
3. McGuire AL, Gibbs RA: Genetics. No longer de-identified. Science 2006; 312: 370-371.
4. Church G, Heeney C, Hawkins N, de Vries J, Boddington P, Kaye J, Bobrow M, Weir B: Public access to genome-wide data: Five views on balancing research with privacy and protection. PLoS Genet 2009; 5:e1000665.
5. Lowrance WW, Collins FS: Ethics. Identifiability in genomic research. Science 2007; 317: 600-602.
6. Resnik DB: Genomic research data: Open vs. restricted access. IRB 2010; 32: 1-6.
7. Sankararaman S, Obozinski G, Jordan MI, Halperin E: Genomic privacy and limits of individual detection in a pool. Nat Genet 2009; 41: 965-967.
8. Visscher PM, Hill WG: The limits of individual identification from sample allele frequencies: Theory and statistical analysis. PLoS Genet 2009; 5:e1000628.
9. Braun R, Rowe W, Schaefer C, Zhang J, Buetow K: Needles in the haystack: Identifying individuals present in pooled genomic data. PLoS Genet 2009; 5:e1000668.
10. Jacobs KB, Yeager M, Wacholder S, Craig D, Kraft P, Hunter DJ, Paschal J, Manolio TA, Tucker M, Hoover RN, Thomas GD, Chanock SJ, Chatterjee N: A new statistic and its power to infer membership in a genomewide association study using genotype frequencies. Nat Genet 2009; 41: 1253-1257.
11. Lumley T, Rice K: Potential for revealing individual- level information in genome-wide association studies. JAMA 2010; 303: 659-660.
12. National Institutes of Health: NIH modifications to genome-wide association studies (GWAS). http://grants.nih.gov/grants/gwas/data-sharing- policy-modifications-20080828.pdf (accessed August 28, 2008).
13. Lemke A, Wolf W, Hebert-Beirne J, Smith M: Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics 2010; 13: 368-377.
14. McGuire AL: Identifiability of DNA data: The need for consistent federal policy. Am J Bioeth 2008; 8: 75-76.
15. Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W: Genomic research and wide data sharing: Views of prospective participants. Genet Med 2010; 12: 486-495.
16. Hoeyer K, Olofsson BO, Mjorndal T, Lynoe N: Informed consent and biobanks: A population- based study of attitudes towards tissue donation for genetic research. Scand J Public Health 2004; 32: 224-229.
17. Johnsson L, Hansson MG, Eriksson S, Helgesson G: Patients' refusal to consent to storage and use of samples in swedish biobanks: Cross sectional study. BMJ 2008; 337:a345.
18. Murphy J, Scott J, Kaufman D, Geller G, Le- Roy L, Hudson K: Public perspectives on informed consent for biobanking. Am J Public Health 2009; 99: 2128-2134.
19. Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL: Public opinion about the importance of privacy in biobank research. Am J Hum Genet 2009; 85: 643-654.
20. Tupasela A, Sihvo S, Snell K, Jallinoja P, Aro AR, Hemminki E: Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among finns. Scand J Public Health 2010; 38: 46-52.
21. Foster MW, Sharp RR: Share and share alike: Deciding how to distribute the scientific and social benefits of genomic data. Nat Rev Genet 2007; 8: 633-639. (Pubitemid 47077276)
22. Caulfield T, McGuire AL, Cho M, Buchanan JA, Burgess MM, Danilczyk U, Diaz CM, Fryer-Edwards K, Green SK, Hodosh MA, Juengst ET, Kaye J, Kedes L, Knoppers BM, Lemmens T, Meslin EM, Murphy J, Nussbaum RL, Otlowski M, Pullman D, Ray PN, Sugarman J, Timmons M: Research ethics recommendations for whole-genome research: Consensus statement. PLoS Biol 2008; 6:e73.
23. Melas PA, Sjoholm LK, Forsner T, Edhborg M, Juth N, Forsell Y, Lavebratt C: Examining the public refusal to consent to DNA biobanking: Empirical data from a swedish population- based study. J Med Ethics 2010; 36: 93-98.
24. Parker M, Bull SJ, de Vries J, Agbenyega T, Doumbo OK, Kwiatkowski DP: Ethical data release in genome-wide association studies in developing countries. PLoS Med 2009; 6:e1000143.
25. Tavani HT: Genomic research and datamining technology: Implications for personal privacy and informed consent. Ethics Inf Technol 2004; 6: 15-28.
26. National Institutes of Health: Policy for sharing of data obtained in NIH supported or conducted genome-wide association studies (GWAS). 2007. http://grants.nih.gov/ grants/guide/notice-files/not-od-07-088. html.
27. McGuire AL, Gibbs RA: Meeting the growing demands of genetic research. J Law Med Ethics 2006; 34: 809-812.
28. Hull SC, Sharp RR, Botkin JR, Brown M, Hughes M, Sugarman J, Schwinn D, Sankar P, Bolcic-Jankovic D, Clarridge BR, Wilfond BS: Patients' views on identifiability of samples and informed consent for genetic research. Am J Bioeth 2008; 8: 62-70.
29. Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S: Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med 1999; 14: 537-546. (Pubitemid 29441632)
30. National Institutes of Health: NIH points to consider for IRBS and institutions in their review of data submission plans for institutional certifications under NIH's policy for sharing of data obtained in NIH supported or conducted genome-wide association studies (GWAS). http://grants.nih.gov/ grants/ gwas/gwas-ptc.pdf (accessed July 30, 2008).