Comparative approaches to biobanks and privacy

Journal of Law, Medicine and Ethics

Volumn 44, Issue 1, 2016, Pages 161-172

  Rothstein, Mark A ^a   Knoppers, Bartha Maria ^b   Harrell, Heather L ^a  

^a University of Louisville School of Medicine   (United States)

^b MCGILL UNIVERSITY   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ACCESS TO INFORMATION; BIOBANK; CONFIDENTIALITY; HUMAN; PRIVACY;

ACCESS TO INFORMATION; BIOLOGICAL SPECIMEN BANKS; CONFIDENTIALITY; HUMANS; PRIVACY;

EID: 85013398436     PISSN: 10731105     EISSN: 1748720X     Source Type: Journal    
DOI: 10.1177/1073110516644207     Document Type: Article

References (17)

1. E. D. Green, J. D. Watson, and F. S. Collins, “Human Genome Project: Twenty-five Years of Big Biology,” Nature 526, no. 7571 (2015): 29-31.
2. E. S. Dove, “Biobanks, Data Sharing, and the Drive for a Global Privacy Governance Framework,” Journal of Law, Medicine & Ethics 43, no. 4 (2015): 675-689
3. J. Kaiser, “Who Has Your DNA-or Wants It,” Science 349, no. 6255 (2015): 1475.
4. B. M. Knoppers, “Biobanking: International Norms,” Journal of Law, Medicine & Ethics, 33, no. 1 (2007): 7-14.
5. A. Thorogood and M. H. Zawati, “International Guidelines for Privacy in Genomic Biobanking,” Journal of Law, Medicine & Ethics 43, no. 4 (2015) (discussing UN, UNESCO, EU, and other statements and guidelines).
6. P.N. Schofield, J. Eppig, and E. Huala et al., “Research Funding: Sustaining the Data and Bioresource Commons,” Science 330, no. 6004 (2010): 592-593.
7. NIH Genomic Data Sharing Policy, “Notice N. NOTOD-14-124,” available at (last visited February 19, 2016).
8. B. M. Knoppers and M. Saginur, “The Babel of Genetic Data Terminology,” Nature Biotechnology 23, no. 8 (2005): 925-927.
9. Global Alliance for Genomics and Health, Privacy and Security Policy Version 26 (May 2005), available at (last visited November 2, 2015).
10. P. Kosseim, E. S. Dove, and C. Baggaley et al., “Building a Data Sharing Model for Global Genomic Research,” Genome Biology 15, no. 8 (2014): 430.
11. H. L. Harrell and M. A. Rothstein, “Biobanking Research and Privacy Laws in the United States,” Journal of Law, Medicine & Ethics 44, no. 1 (2016): 106-127.
12. Maximillian Schrems v. Data Protection Commissioner, C-362/14, EU:2015:650 (Eur. Ct. Just. 2015).
13. M. Scott, “Data Transfer Pact between U.S. and Europe Is Ruled Invalid,” New York Times, October 6, 2015, available at (last visited February 19, 2016).
14. Eligibility for Self-Certification, available at (last visited February 19, 2016).
15. Statement by US Secretary of Commerce Penny Pritzker on European Court of Justice Safe Harbor Framework Decision, Press Release, October 6, 2015, available at (last visited October 6, 2015).
16. J. Stoddart, B. Chan, and Y. Joly, “The European Union’s Adequacy Approach to Privacy and Data Sharing in Health Research,” Journal of Law, Medicine & Ethics 44, no. 1 (2016): 143-155.
17. A. M. Tass, “From ICH to IBH in Biobanking? A Legal Perspective on Harmonization, Standardization and Unification,” Studies in Ethics, Law and Technology 7, no. 1 (2013): 1-18.