International Data Sharing in Practice: New Technologies Meet Old Governance

Biopreservation and Biobanking

Volumn 14, Issue 3, 2016, Pages 231-240

  Murtagh, Madeleine J ^a   Turner, Andrew ^a   Minion, Joel T ^a   Fay, Michaela ^a   Burton, Paul R ^a  

^a UNIVERSITY OF BRISTOL   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ACCESS TO INFORMATION; ARTICLE; COMPUTER SECURITY; CONFIDENTIALITY; DATA PROCESSING; ETHNOGRAPHIC RESEARCH; HUMAN; MEDICAL RESEARCH; METHODOLOGY; POLICY; PRACTICE GUIDELINE; PRIORITY JOURNAL; PRIVACY; RESEARCH ETHICS; RESEARCH SUBJECT; BIOBANK; INFORMATION DISSEMINATION; INTERNATIONAL COOPERATION; INTERPERSONAL COMMUNICATION; LEGISLATION AND JURISPRUDENCE; PERSONNEL;

BIOLOGICAL SPECIMEN BANKS; BIOMEDICAL RESEARCH; CONFIDENTIALITY; DISCLOSURE; HUMANS; INFORMATION DISSEMINATION; INTERNATIONAL COOPERATION; RESEARCH PERSONNEL;

EID: 84973279495     PISSN: 19475535     EISSN: 19475543     Source Type: Journal    
DOI: 10.1089/bio.2016.0002     Document Type: Article

References (34)

1. Murtagh M, Thorisson G, Wallace S, et al. Navigating the perfect [data] storm. Norsk epidemiologi 2012;21:203-209.
2. Murtagh MJ, Demir I, Harris JR, Burton PR. Realizing the promise of population biobanks: A new model for translation. Hum Genet 2011;130:333-345.
3. Walport M, Brest P. Sharing research data to improve public health. Lancet 2011;377:537-539.
4. Carr D, Littler K. Sharing research data to improve public health: A funder perspective. J Empir Res Hum Res Ethics 2015;10:314-316.
5. Trinidad S, Fullerton S, Bares J, Jarvik G, Larson E, Burke W. Genomic research and wide data sharing: Views of prospective participants. Genet Med 2010;12:486-495.
6. Rahm A, Wrenn M, Carroll N, Feigelson H. Biobanking for research: A survey of patient population attitudes and understanding. J Community Genet 2013;4:445-450.
7. Knoppers B, Harris J, Tassé A, et al. Towards a data sharing Code of Conduct for international genomic research. Genome Med 2011;3:46.
8. Fortier I, Burton PR, Robson PJ, et al. Quality, quantity and harmony: The DataSHaPER approach to integrating data across bioclinical studies. Int J Epidemiol 2010;39:1383-1393.
9. Fortier I, Doiron D, Little J, et al. Is rigorous retrospective harmonization possible? Application of the DataSHaPER approach across 53 large studies. Int J Epidemiol 2011; 40:1314-1328.
10. Doiron D, Burton P, Marcon Y, et al. Data harmonization and federated analysis of population-based studies: The BioSHaRE project. Emerg Themes Epidemiol 2013;10:12.
11. Gaye A, Marcon Y, Isaeva J, et al. DataSHIELD: Taking the analysis to the data, not the data to the analysis. Int J Epidemiol 2014;43:1929-1944.
12. van Vliet-Ostaptchouk J, Nuotio M, Slagter S, et al. The prevalence of metabolic syndrome and metabolically healthy obesity in Europe: A collaborative analysis of ten large cohort studies. BMC Endocr Disord 2014;14:9.
13. BioSHaRE. 2015. www.bioshare.eu (accessed November 6, 2015).
14. Burton PR, Murtagh MJ, Boyd A, et al. Data Safe Havens in health research and healthcare. Bioinformatics 2015; 31:3241-3248.
15. Murtagh M, Turner A. Report: Deliverable D3.7-Report on the social and epistemic implications of the Data-SHIELD methodology 2015. www.bioshare.eu/sites/default/ files/1/D3.7%20Report%20on%20the%20social%20and% 20epistemic%20implications%20of%20the%20DataSHIELD %20methodology%20-%20incl%20date.pdf (accessed January 8, 2016).
16. Murtagh M. Report: Deliverable D3.8-Report on Social and epistemic implications of biobank standardisation and harmonisation 2015. www.bioshare.eu/sites/default/files/1/ D3%208%20Report%20on%20Social%20and%20epistemic %20implications%20of%20biobank%20standardisation%20 and%20harmonisation.pdf (accessed May 11, 2016).
17. Murtagh M, Minion J, Fay M. Report of WP3-Objective 3: To formally evaluate the application and utility of new harmonization and standardization tools developed and rolled out under the BioSHaRE-EU project. 2015. www.bioshare .eu/sites/default/files/1/EnMESHD-FinalReport%20incl%20 date%20and%20TOC.pdf (accessed May 11, 2016).
18. HomerN, Szelinger S,RedmanM, et al. Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays. PLoS Genet 2008;4(8):e1000167.
19. Denzin N, Lincoln Y. The SAGE Handbook of Qualitative Research. London: Sage; 2011.
20. Hammersley M, Atkinson P. Ethnography: Principles in Practice. London: Routledge; 2007.
21. Glaser BG. The constant comparative method of qualitative analysis. Soc Probl 1965;12:436-445.
22. Geertz C. The Interpretation of Cultures: Selected Essays. New York: Basic Books; 1973.
23. Austin J. How to Do Things with Words. Oxford: Oxford University Press; 1975.
24. Searle J. Speech Acts: An Essay in the Philosophy of Language. Cambridge: Cambridge University Press; 1969.
25. Foucault M. The Order of Things: An Archaeology of the Human Sciences. London: Routledge; Psychology Press; 2002.
26. Butler J. Gender Trouble. London: Routledge; 2002.
27. Potter J, Wetherell M. Discourse and Social Psychology: Beyond Attitudes and Behaviour. London: Sage; 1987.
28. World Medical Association General Assembly.. World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects. Int J Bioethics 2004;15:124.
29. Gilbert R, Goldstein H, Hemingway H. The market in healthcare data. BMJ 2015;351:h5897.
30. Cambon-Thomsen A, Thorisson G, Mabile L, et al. The role of a bioresource research impact factor as an incentive to share human bioresources. Nat Genet 2011;43:503-504.
31. METADAC. 2015. www.metadac.ac.uk/ (accessed November 11, 2015).
32. P3G. International Policy interoperability and data Access Clearinghouse (IPAC) 2016 Available from: www.p3g .org/ipac (accessed May 11, 2016).
33. BBMRI. 2015. http://bbmri-eric.eu/ (accessed November 6, 2015).
34. BBMRI. 2015. www.bbmri-lpc.org/ (accessed November 6, 2015).