Hostname: page-component-76fb5796d-22dnz Total loading time: 0 Render date: 2024-04-26T18:46:58.023Z Has data issue: false hasContentIssue false
  • English
  • Français

Health privacy in genetic research: Populations and persons

Published online by Cambridge University Press:  17 May 2016

Bartha Maria Knoppers  and
Ma'n H. Abdul-Rahman
Bartha Maria Knoppers
Affiliation:
Centre of Genomics and Policy, Department of Human Genetics, McGill University, Montreal, Quebec, Canada H3A1A4 bartha.knoppers@mcgill.ca
Ma'n H. Abdul-Rahman
Affiliation:
Centre of Genomics and Policy, Department of Human Genetics, McGill University, Montreal, Quebec, Canada H3A1A4 man.abdul-rahman@mcgill.ca
Get access

Abstract

An abstract is not available for this content so a preview has been provided. Please use the Get access link above for information on how to access this content.
Image of the first page of this content. For PDF version, please use the ‘Save PDF’ preceeding this image.'
Type
Forum: Biopolitics and the Road Ahead
Information
Politics and the Life Sciences , Volume 28 , Issue 2 , September 2009 , pp. 99 - 101
Copyright
Copyright © Association for Politics and the Life Sciences 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1.Knoppers, B. M. and Chadwick, R., “Human genetic research: Emerging trends in ethics,” Nature Review Genetics 2005, 6: 75–79.CrossRefGoogle Scholar
2.United Nations, Universal Declaration of Human Rights, G.A. Res. 217A (III), U.N. Doc A/810 at 71. Accessed online: http://www.un.org/en/documents/udhr, 1948.Google Scholar
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: http://www.wma.net/en/30publications/10policies/b3/index.html, 2008.Google Scholar
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.Google Scholar
5.Human Genome Organization (HUGO) Ethics Committee: Statement on Human Genomics Databases, Recommendation 1. Accessed online: http://www.hugo-international.org/img/genomic_2002.pdf, 2002.Google Scholar
6.Collins, F. S. and McKusick, V. A., “Implications of the Human Genome Project for medical science,” JAMA 2001, 285: 540–544.Google Scholar
7.Knoppers, B. M., Abdul-Rahman, M. H., and Bédard, K., “Genomic databases and international collaboration,” KLJ 2007, 18:291–311.Google Scholar
8.M⊘ldrup, C., “Ethical, social and legal implications of pharmacogenomics: A critical review,” Community Genetics 2001, 4: 204–214.Google Scholar
9.See the Public Population Project in Genomics (P3G) website. Accessed online: http://www.p3g.org. See also the International Cancer Genome Consortium website. Accessed online: http://icgc.org/homeGoogle Scholar
10.See the International HapMap Project website. Accessed online: http://hapmap.ncbi.nlm.nih.govGoogle Scholar
11.Sharp, R. R. and Foster, M. W., “Involving study populations in the review of genetic research,” JLME 2000, 28: 41–51.Google Scholar
12.See the International HapMap Project's consent form template. Accessed online: http://hapmap.ncbi.nlm.nih.gov/downloads/elsi/consent/Consent_Form_Template.pdfGoogle Scholar
13.Regan, P. M., Legislating Privacy: Technology, Social Values, and Public Policy (Chapel Hill: University of North Carolina Press, 1995), p. 231.Google Scholar
14.The Quebec Network of Applied Genetic Medicine (RMGA), Statement of Principles: Human Genome Research (ver. 2000). Accessed online: http://www.cartagene.qc.ca/docs/enonce.pdf, 2000.Google Scholar
15.The Quebec Network of Applied Genetic Medicine (RMGA), “Confidentiality” section, Procedure 3.Google Scholar
16.See 1000 Genomes Project's informed consent form template. Accessed online: www.1000genomes.orgGoogle Scholar
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.Google Scholar
18.Wallace, S., Bédard, K., Kent, A., and Knoppers, B. M., “Governance mechanisms and population biobanks: Building a framework for trust,” GenEdit 2008, 6:1–11. Accessed online: http://www.humgen.org/int/GE/en/2008-2.pdfGoogle Scholar