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Health privacy in genetic research: Populations and persons

  • Bartha Maria Knoppers (a1) and Ma'n H. Abdul-Rahman (a2)
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1.Knoppers B. M. and Chadwick R., “Human genetic research: Emerging trends in ethics,” Nature Review Genetics 2005, 6: 7579.
2.United Nations, Universal Declaration of Human Rights, G.A. Res. 217A (III), U.N. Doc A/810 at 71. Accessed online:, 1948.
3.World Medical Association, Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects, adopted by the 59th World Medical Association General Assembly, Seoul, South Korea. Accessed online:, 2008.
4.Homer N., Szelinger S., Redman M., Duggan D., Tembe W., et al. “Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays,” PLoS Genetics, 2008, 4: e1000167.doi:10.1371/journal.pgen.1000167.
5.Human Genome Organization (HUGO) Ethics Committee: Statement on Human Genomics Databases, Recommendation 1. Accessed online:, 2002.
6.Collins F. S. and McKusick V. A., “Implications of the Human Genome Project for medical science,” JAMA 2001, 285: 540544.
7.Knoppers B. M., Abdul-Rahman M. H., and Bédard K., “Genomic databases and international collaboration,” KLJ 2007, 18:291311.
8.M⊘ldrup C., “Ethical, social and legal implications of pharmacogenomics: A critical review,” Community Genetics 2001, 4: 204214.
9.See the Public Population Project in Genomics (P3G) website. Accessed online: See also the International Cancer Genome Consortium website. Accessed online:
10.See the International HapMap Project website. Accessed online:
11.Sharp R. R. and Foster M. W., “Involving study populations in the review of genetic research,” JLME 2000, 28: 4151.
12.See the International HapMap Project's consent form template. Accessed online:
13.Regan P. M., Legislating Privacy: Technology, Social Values, and Public Policy (Chapel Hill: University of North Carolina Press, 1995), p. 231.
14.The Quebec Network of Applied Genetic Medicine (RMGA), Statement of Principles: Human Genome Research (ver. 2000). Accessed online:, 2000.
15.The Quebec Network of Applied Genetic Medicine (RMGA), “Confidentiality” section, Procedure 3.
16.See 1000 Genomes Project's informed consent form template. Accessed online:
17.P3G Consortium, Church G., Heeney C., Hawkins N., de Vries J., et al., “Public access to genome-wide data: Five views on balancing research with privacy and protection,” PloS Genetics 2009, 5:e1000665. doi:10.1371/journal.pgen.10000665.
18.Wallace S., Bédard K., Kent A., and Knoppers B. M., “Governance mechanisms and population biobanks: Building a framework for trust,” GenEdit 2008, 6:111. Accessed online:
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Politics and the Life Sciences
  • ISSN: 0730-9384
  • EISSN: 1471-5457
  • URL: /core/journals/politics-and-the-life-sciences
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