Data sharing policy design for consortia: Challenges for sustainability

Genome Medicine

Volumn 6, Issue 1, 2014, Pages

  Kaye, Jane ^a   Hawkins, Naomi ^b  

^a UNIVERSITY OF OXFORD   (United Kingdom)

^b UNIVERSITY OF EXETER   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ACCESS TO INFORMATION; ARTICLE; DATA PROCESSING; GENOMICS; HAPLOTYPE MAP; HEALTH CARE POLICY; HUMAN; HUMAN GENOME PROJECT; INFORMED CONSENT; INTERNET; LIBRARY; PRIORITY JOURNAL;

EID: 84893138234     PISSN: None     EISSN: 1756994X     Source Type: Journal    
DOI: 10.1186/gm523     Document Type: Article

References (52)

1. The scientific social network. Nat Med 2011, 17:137.
2. Hayden EC. Geneticists push for global data-sharing. Nature 2013, 498:16-17.
3. Creating a Global Alliance to Enable Responsible Sharing of Genomic and Clinical Data. White Paper, 3 June 2013 [http://oicr.on.ca/files/public/White_paper_2013_06_03_FINAL.pdf].
4. Henderson M. Sir John Sulston and the Human Genome Project. [http://www.wellcome.ac.uk/About-us/75th-anniversary/WTVM051157.htm].
5. Draft NIH Genomic Data Sharing Policy. [http://grants.nih.gov/grants/guide/notice-files/NOT-OD-13-119.html].
6. Kaye J, Heeney C, Hawkins N, de Vries J, Boddington P. Data sharing in genomics - reshaping scientific practice. Nat Rev Genet 2009, 10:331-335. 10.1038/nrg2573, 2672783, 19308065.
7. Wellcome Trust Case Control Consortium. [http://www.wtccc.org.uk/].
8. The Personal Genome Project. [http://www.personalgenomes.org/].
9. Berman H, Henrick K, Nakamura H. Announcing the worldwide Protein Data Bank. Nat Struct Biol 2003, 10:980. 10.1038/nsb1203-980, 14634627.
10. Cook-Deegan RM. The Gene Wars: Science, Politics, and the Human Genome 1994, New York: WW Norton.
11. Ankeny RA. Sequencing the genome from nematode to human: changing methods, changing science. Endeavour 2003, 27:87-92. 10.1016/S0160-9327(03)00061-9, 12798815.
12. Summary of Principles Agreed at the First International Strategy Meeting on Human Genome Sequencing: 25-28 February 1996. 1996, Bermuda: HUGO, [http://www.ornl.gov/sci/techresources/Human_Genome/research/bermuda.shtml].
13. Sharing Data from Large-scale Biological Research Projects: A System of Tripartite Responsibility (The Fort Lauderdale Agreement). 2003, [http://www.genome.gov/pages/research/wellcomereport0303.pdf].
14. Birney E, Hudson TJ, Green ED, Gunter C, Eddy S, Rogers J, Harris JR, Ehrlich SD, Apweiler R, Austin CP, Berglund L, Bobrow M, Bountra C, Brookes AJ, Cambon-Thomsen A, Carter NP, Chisholm RL, Contreras JL, Cooke RM, Crosby WL, Dewar K, Durbin R, Dyke SO, Ecker JR, El Emam K, Feuk L, Gabriel SB, Gallacher J, Gelbart WM, et al. Toronto International Data Release Workshop Authors Prepublication data sharing. Nature 2009, 461:168-170. 3073843, 19741685, Toronto International Data Release Workshop Authors.
15. International HapMap Consortium The International HapMap project. Nature 2003, 426:789-796. 10.1038/nature02168, 14685227, International HapMap Consortium.
16. Kaizer J. DNA sequencing - a plan to capture human diversity in 1,000 genomes. Science 2008, 319:395. 10.1126/science.319.5862.395, 18218868.
17. Genetic Association Information Network. [http://www.genome.gov/19518664#al-4].
18. Mailman MD, Feolo M, Jin Y, Kimura M, Tryka K, Bagoutdinov R, Hao L, Kiang A, Paschall J, Phan L, Popova N, Pretel S, Ziyabari L, Lee M, Shao Y, Wang ZY, Sirotkin K, Ward M, Kholodov M, Zbicz K, Beck J, Kimelman M, Shevelev S, Preuss D, Yaschenko E, Graeff A, Ostell J, Sherry ST. The NCBI dbGaP database of genotyes and phenotypes. Nat Genet 2007, 39:1181-1186. 2031016, 17898773.
19. 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. 10.1371/journal.pgen.1000167, 2516199, 18769715.
20. Jasny BR. Realities of data sharing using the genome wars as case study - an historical perspective and commentary. EPJ Data Science 2013, 2:1.
21. Walport M, Brest P. Sharing research data to improve public health. Lancet 2011, 377:537-539. 10.1016/S0140-6736(10)62234-9, 21216456.
22. Research Council UK announces open access policy. [http://www.rcuk.ac.uk/research/Pages/outputs.aspx].
23. dbGaP. [http://www.ncbi.nlm.nih.gov/gap].
24. The European Genome-phenome Archive. [http://www.ebi.ac.uk/ega/].
25. Dyke SO, Hubbard TJ. Developing and implementing an institute-wide data sharing policy. Genome Med 2011, 3:60. 10.1186/gm276, 3239235, 21955348.
26. Pryor G. Multi-scale data sharing in the life sciences: some lessons for policy makers. Int J Digital Curation 2009, 4:71.
27. Editorial Ministry of Noise. Nat Genet 2013, 45:843. Editorial.
28. Joly Y, Dove ES, Knoppers BM, Bobrow M, Chalmers D. Data sharing in the post-genomic world: the experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO). PLoS Comp Biol 2012, 8:e1002549.
29. The Wellcome Trust Case Control Consortium Genome-wide association study of 14,000 cases of seven common diseases and 3,000 shared controls. Nature 2007, 447:661-678. 10.1038/nature05911, 2719288, 17554300, The Wellcome Trust Case Control Consortium.
30. Hudson TJ, Anderson W, Artez A, Barker AD, Bell C, Bernabé RR, Bhan MK, Calvo F, Eerola I, Gerhard DS, Guttmacher A, Guyer M, Hemsley FM, Jennings JL, Kerr D, Klatt P, Kolar P, Kusada J, Lane DP, Laplace F, Youyong L, Nettekoven G, Ozenberger B, Peterson J, Rao TS, Remacle J, Schafer AJ, Shibata T, Stratton MR, et al. International Cancer Genome Consortium International network of cancer genome projects. Nature 2010, 464:993-998. 10.1038/nature08987, 2902243, 20393554, International Cancer Genome Consortium.
31. The Malaria Genomic Epidemiology Network A global network for investigating the genomic epidemiology of malaria. Nature 2008, 456:732-737. 10.1038/nature07632, 3758999, 19079050, The Malaria Genomic Epidemiology Network.
32. 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. 10.1371/journal.pmed.1000143, 2771895, 19956792.
33. Fortin S, Pathmasiri S, Grintuch R, Deschênes M. 'Access arrangements' for biobanks: a fine line between facilitating and hindering collaboration. Public Health Genomics 2011, 14:104-114. 10.1159/000309852, 20689244.
34. Stein DT, Terry SF. Reforming biobank consent policy: a necessary move away from broad consent toward dynamic consent. Genet Test Mol Biomarkers 2013, 17:855-856. 10.1089/gtmb.2013.1550, 24283583.
35. Kaye J, Whitley EA, Kanellopoulou N, Creese S, Hughes KJ, Lund D. Dynamic consent: a solution to a perennial problem?. (Rapid response to Sheehan M: Broad consent is informed consent.BMJ343:d6900.) [http://www.bmj.com/rapid-response/2011/11/08/re-broad-consent-informed-consent].
36. Kaye J, Curren L, Anderson N, Edwards K, Fullerton SM, Kanellopoulou N, Lund D, MacArthur DG, Mascalzoni D, Shepherd J, Taylor PL, Terry SF, Winter SF. From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet 2012, 13:371-376. 10.1038/nrg3218, 3806497, 22473380.
37. Yuille M, Dixon K, Platt A, Pullum S, Lewis D, Hall A, Ollier W. The UK DNA banking network: a 'fair access' biobank. Cell Tissue Bank 2010, 11:241-251. 10.1007/s10561-009-9150-3, 2893302, 19672698.
38. Borgman CL. The conundrum of sharing research data. J Am Soc Inf Sci Technol 2012, 6:1059-1078.
39. National Institutes of Health Data Sharing Policy. [http://grants.nih.gov/grants/policy/data_sharing/].
40. Pearce N, Smith AH. Data sharing: not as simple as it seems. Environ Health 2011, 10:107. 10.1186/1476-069X-10-107, 3260112, 22188646.
41. Tenopir C, Allard S, Douglass K, Aydinoglu AU, Wu L, Read E, Manoff M, Frame M. Data sharing by scientists: practices and perceptions. PLoS One 2011, 6:e21101. 10.1371/journal.pone.0021101, 3126798, 21738610.
42. Guttmacher AE, Nabel EG, Collins FS. Why data-sharing policies matter. Proc Natl Acad Sci U S A 2009, 106:16894. 10.1073/pnas.0910378106, 2761326, 19805161.
43. Schekman R. PNAS takes action regarding breach of NIH embargo policy on a PNAS paper. Proc Natl Acad Sci U S A 2009, 106:16893. 10.1073/pnas.0910317106, 2761318, 19805088.
44. Cambon-Thomsen A, Thorisson GA, Mabile L. BRIF workshop group The role of a bioresource research impact factor as an incentive to share human bioresources. Nat Genet 2011, 43:503-504. 10.1038/ng.831, 21614086, BRIF workshop group.
45. Thorisson GA. ORCID and data publication - identifying knowledge contributors to motivate sharing. Data Citation Principles Harvard (via slideshare) [http://es.slideshare.net/gthorisson/data-citation-principles-harvard-may-2011].
46. Savage CJ, Vickers AJ. Empirical study of data sharing by authors publishing in PLoS journals. PLoS One 2009, 4:e7078. 10.1371/journal.pone.0007078, 2739314, 19763261.
47. Louis K, Jones L, Campbell E. Sharing in science. Am Sci 2002, 90:304-309.
48. Kaye J. From single biobanks to international networks: developing e-governance. Hum Genet 2011, 130:377-382. 10.1007/s00439-011-1063-0, 3155683, 21785980.
49. Im HK, 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. 10.1016/j.ajhg.2012.02.008, 3322234, 22463877.
50. Dynamic Consent Project. [http://www.publichealth.ox.ac.uk/helex/about/research-projects-1/dynamic-consent-project].
51. Kaye J, Meslin EM, Knoppers BM, Juengst ET, Deschênes M, Cambon-Thomsen A, Chalmers D, De Vries J, Edwards K, Hoppe N, Kent A, Adebamowo C, Marshall P, Kato K. ELSI 2.0 for genomics and society. Science 2012, 336:673-674. 10.1126/science.1218015, 22582247.
52. Field D, Sansone S, Collis A, Booth T, Dukes P, Gregurick SK, Kennedy K, Kolar P, Kolker E, Maxon M, Mugabushaka A, Perrin N, Remacle JE, Remington K. 'Omics data sharing. Science 2009, 326:234-236. 10.1126/science.1180598, 2770171, 19815759.