Currents in Contemporary Ethics: Meeting the Growing Demands of Genetic Research

Request for Information (RFI): Proposed Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies (GWAS), Federal Register 71 (2006): 51629, available at <http://a257.g.akamaitech.net/7/257/2422/01jan20061800/edocket.access.gpo.gov/2006/E6–14416.htm> (last visited September 28, 2006); U.S. Department of Health and Human Services (DHHS), “NIH Seeks Input on Proposed Repository for Genetic Information,” NIH News, August 30, 2006, at <http://www.nih.gov/news/pr/aug2006/od-30.htm> (last visited September 28, 2006).

Proposed Policy for Sharing of Data, supra note 1.

Department of Health and Human Services (DHHS), “Revolutionary Genome Sequencing Technologies—The $1000 Genome,” NIH Request for Applications RFA-HG-04-003, at <http://grants.nih.gov/grants/guide/rfa-files/RFA-HG-04-003.html> (last visited September 28, 2006).

See X Prize Foundation, at <http://www.xprizefoundation.com/prizes/xprize_genome.asp> (last ed visited September 28, 2006).

National Human Genome Research Institute, NIH-DOE Guidelines for Access to Mapping and Sequencing Data and Material Resources (1991) at <http://www.genome.gov/10000925> (last visited September 28, 2006); National Human Genome Research Institute, NHGRI Policy on Release of Human Genomic Sequence Data (March 1997, Updated December 2000) at <http://www.genome.gov/10000910> (last visited September 28, 2006); National Human Genome Research Institute, Reaffirmation and Extension of NHGRI Rapid Data Release Policies: Large-Scale Sequencing and Other Community Resource Projects (February 2003) at <http://www.genome.gov/10506537> (last visited September 28, 2006).

Proposed Policy for Sharing of Data, supra note 1.

DHHS, supra note 1.

Lin Z. Owen A. B. Altman R. B. , “Genomic Research and Human Subject Privacy,” Science 305 (2004): 183.

McGuire A. L. and Gibbs R. A. , “No Longer De-Identified,” Science 312 (2006): 370–371.

. Protection of Human Subjects, 45 CFR 46 (2005).

Office for Human Research Protections, “Guidance on Research Involving Coded Private Information or Biological Specimens,” August 10, 2004, at <http://www.hhs.gov/ohrp/humansubjects/guidance/cdebiol.pdf> (last visited September 28, 2006).

McGuire and Gibbs , supra note 8.

Security and Privacy, 45 CFR 164.514 (2002).

Security and Privacy, 45 CFR 164.514.

Department of Health and Human Services (DHHS), “Research Repositories, Databases, and the HIPAA Privacy Rule,” January 2004, at <http://privacyrulean-dresearch.nih.gov/pdf/research_repositories_final.pdf> (last visited September 28, 2006); Roche P. A. , “Protecting Privacy of Human Subjects,” Science 307 (2005): 1200; Rothstein M. A. , “Expanding the Ethical Analysis of Biobanks,” Journal of Law, Medicine & Ethics 33, no. 1 (2005): 89.

DHHS, supra note 18.

Security and Privacy, 45 CFR, at 164. 501.

Security and Privacy, 45 CFR, at 164. 512(i).

Proposed Policy for Sharing of Data, supra note 1.

The International HapMap Consortium, “Template Consent Form,” at <www.hap-map.org/consent.html.en> (last visited September 28, 2006).

McGuire and Gibbs , supra note 8.