-
1
-
-
77956396767
-
Is deidentification sufficient to protect health privacy in research?
-
Rothstein MA. Is deidentification sufficient to protect health privacy in research? Am J Bioeth 2010;10:3-11
-
(2010)
Am J Bioeth
, vol.10
, pp. 3-11
-
-
Rothstein, M.A.1
-
2
-
-
0345308734
-
-
(accessed August 28, 2016)
-
National Institute of Health. Genomic Data Sharing Policy. 2014. Available at: https://gds.nih.gov/PDF/NIH-GDS- Policy.pdf (accessed August 28, 2016)
-
(2014)
National Institute of Health
-
-
-
3
-
-
67349132836
-
Data sharing in genomics-Re-shaping scientific practice
-
Kaye J, Heeney C, Hawkins N, et al. Data sharing in genomics-Re-shaping scientific practice. Nat Rev Genet 2009;10:331-335
-
(2009)
Nat Rev Genet
, vol.10
, pp. 331-335
-
-
Kaye, J.1
Heeney, C.2
Hawkins, N.3
-
4
-
-
85031279456
-
-
(accessed August 28, 2016)
-
Expert Advisory Group on Data Access. Governance of Data Access. 2015. Available at: https://wellcome.ac.uk/ sites/default/files/governance-of-data-access-eagda-jun15.pdf (accessed August 28, 2016)
-
(2015)
-
-
-
5
-
-
84985028180
-
You want the right amount of oversight Interviews with data access committee members and experts on genomic data access
-
Shabani M, Borry P. ''You want the right amount of oversight'': Interviews with data access committee members and experts on genomic data access. Genet Med 2016;18: 892-897
-
(2016)
Genet Med
, vol.18
, pp. 892-897
-
-
Shabani, M.1
Borry, P.2
-
6
-
-
84875949448
-
A mechanism for controlled access to GWAS data: Experience of the GAIN Data Access Committee
-
Ramos EM, Din-Lovinescu C, Bookman EB, et al. A mechanism for controlled access to GWAS data: Experience of the GAIN Data Access Committee. Am J Hum Genet 2013;92:479-488
-
(2013)
Am J Hum Genet
, vol.92
, pp. 479-488
-
-
Ramos, E.M.1
Din-Lovinescu, C.2
Bookman, E.B.3
-
7
-
-
72949123257
-
Ethical data release in genome-wide association studies in developing countries
-
Parker M, Bull SJ, de Vries J, et al. Ethical data release in genome-wide association studies in developing countries. PLoS Med 2009;6:e1000143
-
(2009)
PLoS Med
, vol.6
, pp. e1000143
-
-
Parker, M.1
Bull, S.J.2
De Vries, J.3
-
8
-
-
84973279495
-
International data sharing in practice: New technologies meet old governance
-
Murtagh MJ, Turner A, Minion JT, et al. International data sharing in practice: New technologies meet old governance. Biopreserv Biobank 2016;14:231-240
-
(2016)
Biopreserv Biobank
, vol.14
, pp. 231-240
-
-
Murtagh, M.J.1
Turner, A.2
Minion, J.T.3
-
9
-
-
84929042712
-
From the principles of genomic data sharing to the practices of data access committees
-
Shabani M, Knoppers BM, Borry P. From the principles of genomic data sharing to the practices of data access committees. EMBO Mol Med 2015;7:507-509
-
(2015)
EMBO Mol Med
, vol.7
, pp. 507-509
-
-
Shabani, M.1
Knoppers, B.M.2
Borry, P.3
-
10
-
-
84940650144
-
Framework for responsible sharing of genomic and health-related data
-
Knoppers BM. Framework for responsible sharing of genomic and health-related data. Hugo J 2014;8:3
-
(2014)
Hugo J
, vol.8
, pp. 3
-
-
Knoppers, B.M.1
-
11
-
-
84906924430
-
Knowing who to trust: Exploring the role of 'ethical metadata' in mediating risk of harm in collaborative genomics research in Africa
-
Vries J, Williams TN, Bojang K, et al. Knowing who to trust: Exploring the role of 'ethical metadata' in mediating risk of harm in collaborative genomics research in Africa. BMC Med Ethics 2014;15:62
-
(2014)
BMC Med Ethics
, vol.15
, pp. 62
-
-
Vries, J.1
Williams, T.N.2
Bojang, K.3
-
12
-
-
80053350813
-
Secondary uses and the governance of de-identified data: Lessons from the human genome diversity panel
-
Fullerton SM, Lee SS. Secondary uses and the governance of de-identified data: Lessons from the human genome diversity panel. BMC Med Ethics 2011;12:16
-
(2011)
BMC Med Ethics
, vol.12
, pp. 16
-
-
Fullerton, S.M.1
Lee, S.S.2
-
13
-
-
84926061586
-
A critical appraisal of the article 29 working party opinion 05/2014 on data anonymization techniques
-
El Emam K, Alvarez C. A critical appraisal of the Article 29 Working Party Opinion 05/2014 on data anonymization techniques. International Data Privacy Law 2014. doi: 10.1093/idpl/ipu033
-
(2014)
International Data Privacy Law
-
-
El Emam, K.1
Alvarez, C.2
-
14
-
-
84911908661
-
Attitudes of research participants and the general public towards genomic data sharing: A systematic literature review
-
Shabani M, Bezuidenhout L, Borry P. Attitudes of research participants and the general public towards genomic data sharing: A systematic literature review. Expert Rev Mol Diagn 2014;14:1053-1065
-
(2014)
Expert Rev Mol Diagn
, vol.14
, pp. 1053-1065
-
-
Shabani, M.1
Bezuidenhout, L.2
Borry, P.3
-
15
-
-
84858271974
-
Bodies of data: Genomic data and bioscience data sharing
-
Ossorio PN. Bodies of data: Genomic data and bioscience data sharing. Soc Res (New York) 2011;78:907-932
-
(2011)
Soc Res (New York)
, vol.78
, pp. 907-932
-
-
Ossorio, P.N.1
-
17
-
-
85034114689
-
It depends whose data are being shared: Considerations for genomic data sharing policies
-
Robinson JO, Slashinski MJ, Chiao E, et al. It depends whose data are being shared: Considerations for genomic data sharing policies. J Law Biosci 2015. doi: 10.1093/jlb/ lsv030
-
(2015)
J Law Biosci
-
-
Robinson, J.O.1
Slashinski, M.J.2
Chiao, E.3
-
18
-
-
84958729893
-
Consent codes: Upholding standard data use conditions
-
Dyke SO, Philippakis AA, De Argila JR, et al. Consent codes: Upholding standard data use conditions. PLoS Genet 2016;12:e1005772
-
(2016)
PLoS Genet
, vol.12
, pp. e1005772
-
-
Dyke, S.O.1
Philippakis, A.A.2
De Argila, J.R.3
-
19
-
-
84963544832
-
First, design for data sharing
-
Wilbanks J, Friend SH. First, design for data sharing. Nat Biotechnol 2016;34:377-379
-
(2016)
Nat Biotechnol
, vol.34
, pp. 377-379
-
-
Wilbanks, J.1
Friend, S.H.2
-
20
-
-
84973321077
-
Access governance for Biobanks: The case of the BioSHaRE-EU cohorts
-
Kaye J, Briceno Moraia L, Mitchell C, et al. Access governance for Biobanks: The case of the BioSHaRE-EU cohorts. Biopreserv Biobank 2016;14:201-206
-
(2016)
Biopreserv Biobank
, vol.14
, pp. 201-206
-
-
Kaye, J.1
Briceno Moraia, L.2
Mitchell, C.3
-
22
-
-
85032694552
-
-
(accessed August 28, 2016)
-
Reseau de medecine genetique appliquee (RMGA). Statement of Principles. 2016. Available at: www.rmga.qc.ca/ en/issues.html (accessed August 28, 2016)
-
(2016)
Statement of Principles
-
-
-
23
-
-
79961142013
-
Broad data sharing in genetic research: Views of institutional review board professionals
-
Lemke AA, Smith ME, Wolf WA, et al. Broad data sharing in genetic research: Views of institutional review board professionals. IRB 2011;33:1-5
-
(2011)
IRB
, vol.33
, pp. 1-5
-
-
Lemke, A.A.1
Smith, M.E.2
Wolf, W.A.3
-
25
-
-
84962254401
-
Ethics review for international data-intensive research
-
Dove ES, Townend D, Meslin EM, et al. Ethics review for international data-intensive research. Science 2016;351: 1399-1400
-
(2016)
Science
, vol.351
, pp. 1399-1400
-
-
Dove, E.S.1
Townend, D.2
Meslin, E.M.3
-
26
-
-
79960929510
-
The myth of community differences as the cause of variations among IRBs
-
Klitzman R. The myth of community differences as the cause of variations among IRBs. AJOB Prim Res 2011;2: 24-33
-
(2011)
AJOB Prim Res
, vol.2
, pp. 24-33
-
-
Klitzman, R.1
|