Confronting Biospecimen Exceptionalism in Proposed Revisions to the Common Rule

Hastings Center Report

Volumn 46, Issue 1, 2016, Pages 4-5

  Lynch, Holly Fernandez ^a   Bierer, Barbara E ^a   Cohen, I Glenn ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

HUMAN; PRIVACY; ANONYMIZATION; CONFIDENTIALITY; ETHICS; GOVERNMENT; HEALTH CARE FACILITY; IDENTIFIABLE INFORMATION; MANAGEMENT; POLICY; PSYCHOLOGY; PUBLIC OPINION; RESEARCH SUBJECT; STANDARDS; TRENDS; UNITED STATES;

BIOLOGICAL SPECIMEN BANKS; CONFIDENTIALITY; DATA ANONYMIZATION; HUMANS; PERSONALLY IDENTIFIABLE INFORMATION; POLICY MAKING; PUBLIC OPINION; PUBLIC POLICY; RESEARCH SUBJECTS; UNITED STATES; UNITED STATES DEPT. OF HEALTH AND HUMAN SERVICES;

EID: 84955482789     PISSN: 00930334     EISSN: 1552146X     Source Type: Journal    
DOI: 10.1002/hast.528     Document Type: Note

References (7)

1. 80 Fed. Reg. 53933 (2015), http://www.gpo.gov/fdsys/pkg/FR-2015-09-08/pdf/2015-21756.pdf.
2. U.K. Biobank, available at http://www.ukbiobank.ac.uk/published-papers/.
3. M. Barnes, "Biospecimens and the NPRM, " presentation, Harvard Law School, November 16, 2015, http://www.slideshare.net/petrieflom/mark-barnes-biospecimens-and-the-nprm.
4. "OHRP Guidance on Research Involving Coded Private Information or Biological Specimens, " U.S. Department of Health & Human Services, October 16, 2008, http://www.hhs.gov/ohrp/policy/cdebiol.html.
5. E. Emanuel, "Reform of Clinical Research Regulations, Finally, " New England Journal of Medicine, November 4, 2015, http://www.nejm.org/doi/pdf/10.1056/NEJMp1512463.
6. E. Wright Clayton, "Modeling Risks to Privacy in Genomics Research Shows How the NPRM Misses the Mark, " presentation, Harvard Law School, November 16, 2015, http://www.slideshare.net/petrieflom/ellen-wrightclayton-modeling-risk-to-privacy-in-genomics-research.
7. R. Albergotti, "Furor Erupts over Facebook's Experiment on Users, " Wall Street Journal, June 30, 2014