Ethical data release in genome-wide association studies in developing countries

PLoS Medicine

Volumn 6, Issue 11, 2009, Pages

  Parker, Michael ^a   Bull, Susan J ^a,b   De Vries, Jantina ^a,b   Agbenyega, Tsiri ^c   Doumbo, Ogobara K ^d   Kwiatkowski, Dominic P ^b,e  

^a UNIVERSITY OF OXFORD   (United Kingdom)

^b UNIVERSITY OF OXFORD   (United Kingdom)

^c KWAME NKRUMAH UNIVERSITY OF SCIENCE AND TECHNOLOGY   (Ghana)

^d UNIVERSITY OF BAMAKO   (Mali)

^e WELLCOME TRUST SANGER INSTITUTE   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

DEVELOPING COUNTRY; GENOME; GENOME ANALYSIS; HEALTH CARE ACCESS; HEALTH CARE MANAGEMENT; HEALTH CARE POLICY; HUMAN; MEDICAL ETHICS; MEDICAL INFORMATICS; MEDICAL INFORMATION; MEDICAL RESEARCH; REVIEW; ARTICLE; ETHICS; GENETIC ASSOCIATION; INFORMATION DISSEMINATION; INTERNATIONAL COOPERATION; POLICY; RESEARCH ETHICS;

DEVELOPING COUNTRIES; ETHICS, RESEARCH; GENOME-WIDE ASSOCIATION STUDY; HUMANS; INFORMATION DISSEMINATION; INTERNATIONAL COOPERATION; PUBLIC POLICY;

EID: 72949123257     PISSN: 15491277     EISSN: 15491676     Source Type: Journal    
DOI: 10.1371/journal.pmed.1000143     Document Type: Review

References (27)

1. Global Forum for Health Research (2008) Equitable access: research challenges for health in developing countries. Geneva: Global Forum for Health Research.
2. Manolio TA, Brooks LD, Collins FS (2008) A HapMap harvest of insights into the genetics of common disease. J Clin Invest 118: 1590-1605.
3. Hardy J, Singleton A (2009) Genome wide association studies and human disease. N Engl J Med 360: 1759-1768.
4. Wellcome Trust Case Control Consortium (2007) Genome-wide association study of 14,000 cases of seven common diseases and 3,000 shared controls. Nature 447: 661-678.
5. Chokshi DA, Thera MA, Parker M, Diakite M, Makani J, et al. (2007) Valid consent for genomic epidemiology in developing countries. PLoS Med 4: e95. doi:10.1371/journal.pmed.0040095.
6. Chokshi DA, Parker M, Kwiatkowski DP (2006) Data sharing and intellectual property in a genomic epidemiology network: policies for large-scale research collaboration. Bull World Health Organ 84: 382-387.
7. GAIN Collaborative Research Group, Manolio TA, Rodriguez LL, Brooks L, et al. (2007) New models of collaboration in genomewide association studies: the Genetic Association Information Network. Nat Genet 39: 1045-1051.
8. Hilgartner S (1995) Biomolecular databases: new communication regimes for biology? Sci Commun 17: 240-263.
9. Hilgartner S, Brandt-Rauf SI (1994) Data access, ownership and control: toward empirical studies of access practices. Sci Commun 15: 355-372.
10. Wellcome Trust (2007) Policy on data management and sharing. Available: http://www.wellcome.ac.uk/About-us/Policy/Policy-and-position-statements/ WTX035043.htm. Accessed 22 October 2009.
11. NIH (2007) Policy for sharing of data obtained in NIH supported or conducted genome-wide association studies (GWAS). Available: http://grants.nih.gov/grants/guide/notice-files/NOT-OD-07-088.html. Accessed 3 May 2009.
12. NIH (2007) Reaffirmation and extension of NHGRI rapid data release policies: large-scale sequencing and other community resource projects. Available: http://www.genome.gov/10506537. Accessed 3 May 2009.
13. Cook-Deegan R, McCormack SJ (2001) Intellectual property: patents, secrecy and DNA. Science 293: 217.
14. Cambon-Thomsen A, Rial-Sebbag E, Knoppers BM (2007) Trends in ethical and legal frameworks for the use of human biobanks. Eur Respir J 30: 373-382.
15. Lowrence W, Collins F (2007) Identifiability in genomic research. Science 317: 600-602.
16. Foster MW, Sharp RR (2007) Share and share alike: deciding how to distribute the scientific and social benefits of genomic data. Nat Rev Genet 8: 633-639.
17. Caulfield T, McGuire AL, Cho M, Buchanan JA, Burgess MM, et al. (2008) Research ethics recommendations for whole-genome research: consensus statement. PLoS Biology 6: e73. doi:10.1371/journal.pbio.0060073.
18. Lunshof J, Chadwick R, Vorhaus DB, Church GM (2008) From Genetic Privacy to open consent. Nat Rev Genet 9: 406-410.
19. McGuire AL, Gibbs RA (2006) No longer deidentified. Science 312: 370-371.
20. Ellison GTH, Jones IR (2002) Social identities and the 'new genetics': scientific and social consequences. Crit Public Health 12: 265-282.
21. McGuire AL, Caulfield T, Cho M (2008) Research Ethics and the challenge of wholegenome sequencing. Nat Rev Genet 9: 152-156.
22. Parker M (2005) When is research on medical records without consent ethical? J Health Serv Res Policy 10: 183-186.
23. Haddow G, Laurie G, Cunningham-Burley S, Hunter KG (2007) Tackling community concerns about commercialisation and genetic research: a modest interdisciplinary proposal. Soc Sci Med 64: 272-282.
24. Arzberger P, Schroeder P, Beaulieu A, Bowker G, Casey K, et al. (2004) An international framework to promote access to data. Science 303: 1777-1778.
25. Malaria Genomic Epidemiology Network (2008) A global network for investigating the genomic epidemiology of malaria. Nature 456: 732-737.
26. Wellcome Trust (2003) The Fort Lauderdale. Available: http://www.genome.gov/Pages/Research/WellcomeReport0303.pdf. Accessed 3 May 2009.
27. Mascalzoni D, Hicks A, Pramstaller P, Wjst M (2008) Informed consent in the genomics era. PLoSMedicine 5: e192. doi:10.1371/journal.pmed.0050192.