ACTION BIOSCIENCE
Bookmark and Share

Talking Past Each Other: Genetic Testing and Indigenous Populations

Ikechi Mgbeoji

articlehighlights

An ethical approach to genetic testing of indigenous populations requires:

  • protection from racial discrimination
  • preservation of human rights
  • prior informed consent of individuals
  • retention of a population’s cultural self-determination

September 2007

Population genetics focuses on groups, not individuals.
Mgbeojiphoto.jpg

Blood samples have been taken from the Yanomami Indians of the Amazon for genetic research. Source: Creative Commons.

Although blood samples have been collected from indigenous or native peoples since the early 1920s, genetic testing of the world’s indigenous populations has been a source of heated controversy in the past two decades. Since the development of technology for decoding the genetic sequence of living organisms, geneticists and researchers have predicted that insights into human genes will enable scientists to better understand the genetic bases of numerous human diseases and disorders. Excited talk about possible cures has inspired a gene rush reminiscent of the California gold rush.

According to the UNESCO Bioethics Committee, population genetics is a discipline of genetics which “considers the characteristics of genes within a population as opposed to a description of the genes in a particular individual.”1 In the quest for a holistic understanding of gene-environment interactions, several large-scale population genetic research studies have been initiated. Only Ashkenazi Jews have previously been the subject of such an intense and sustained scientific scrutiny.

Dr. Ikechi Mgbeoji, JSD, is currently Associate Professor of Law at the Osgoode Hall Law School, York University, Canada. Before moving to Osgoode, Dr. Mgbeoji taught at the Faculty of Law, University of British Columbia. He was an attorney with the Nigerian law firm of F.O. Akinrele & Co. He teaches and researches in the area of Patent Law, Trademarks, Copyrights, Torts, Public International Law and International Environmental Law. He is also a consultant to the Environmental Law Centre (ELC) of the World Conservation Union, IUCN, Bonn, Germany. His books include Global Biopiracy: Patents, Plants, and Indigenous Peoples (Cornell University Press, 2006)
http://www.osgoode.yorku.ca/faculty/full-time/ikechi-mgbeoji

Talking Past Each Other: Genetic Testing and Indigenous Populations

The Genographic Project

Searchable maps and other information about the quest to find the genetic link between ourselves and our ancestors.
https://genographic.nationalgeographic.com/genographic/index.html

Population genetics

A summary of the main principles of this field.
http://library.thinkquest.org/19037/population.html

Human Genome Diversity Project

Information about this international effort to understand the DNA of the human species.
http://www.stanford.edu/group/morrinst/hgdp.html

Convention on Biological Diversity

The site offers links to other Web sites that provide information on indigenous people and traditional knowledge.
http://www.cbd.int/default.shtml

Ethics of patenting DNA

(July 2002) Prepared by an international group of experts, this extensive discussion paper suggests an ethical framework for gene patenting that will “stimulate innovation for the public good.”
http://www.nuffieldbioethics.org/go/ourwork/patentingdna/publication_310.html

Genetics and Patenting

An overview of what this means and how it works, from the Human Genome Project.
http://www.ornl.gov/sci/techresources/Human_Genome/elsi/patents.shtml

The Native Web

Information about indigenous people around the world, from anthropology to spirituality. Includes the NativeWiki.
http://www.nativeweb.org/

Consumer Coalition for Health Privacy

Become an advocate for health privacy by joining this Georgetown University project to receive the latest health privacy news.
http://www.healthprivacy.org/

nwabrlogosmall.png

Teaching Resources from the Northwest Association for Biomedical Research (NWABR)

The Northwest Association for Biomedical Research (NWABR) strengthens public trust in research through education and dialogue. Its diverse membership spans academic, industry, non-profit research institutes, health care, and voluntary health organizations. Through membership and extensive education programs, it fosters a shared commitment to the ethical conduct of research and ensures the vitality of the life sciences community.

Ethics Primer
The Ethics Primer provides engaging, interactive, and classroom-friendly lesson ideas for integrating ethical issues into a science classroom. It also provides basic background on ethics as a discipline, with straightforward descriptions of major ethical theories. Several decision-making frameworks are included to help students apply reasoned analysis to ethical issues.
http://www.nwabr.org/curriculum/ethics-primer
Bioethics 101
Bioethics 101 provides a systematic, five-lesson introductory course to support educators in incorporating bioethics into the classroom through the use of sequential, day-to-day lesson plans. This curriculum is designed to help science teachers in guiding their students to analyze issues using scientific facts, ethical principles, and reasoned judgment.
http://www.nwabr.org/curriculum/bioethics-101
Introductory Bioinformatics: Genetic Testing
The curriculum unit explores how bioinformatics is applied to genetic testing. Students are also introduced to principles-based bioethics in order to support their thoughtful consideration of the many social and ethical implications of genetic testing. Throughout the unit, students are presented with a number of career options in which the tools of bioinformatics are used.
http://www.nwabr.org/curriculum/introductory-bioinformatics-genetic-testing

ELSI Teacher Resources

FAQ’s about the privacy issues related to medical databases, presented by the Lawrence Berkeley National Laboratory’s ELSI (ethical, legal, and social issues in science) project. Designed for teachers, with classroom activities.
http://www.lbl.gov/Education/ELSI/privacy-main.html

Genetic Lesson Plan Ideas

A directory of online lesson plans on genetics and genomics.
http://www.kumc.edu/gec/lessons.html

  1. UNESCO, International Bioethics Committee, Bioethics and Human Population Genetics Research, (Paris: International Bioethics Committee, 15 November 1995). Available online http://www.portal.unesco.org/ulis/index.html 9/9/09: No longer available.
  2. L.L. Cavalli-Sforza, et al, “Call for a World-Wide Survey of Human Genetic Diversity: A Vanishing Opportunity for the Human Genome Project” (1991) 11: 2 Genomics 490.
  3. Skuli Sigurdsson, “Yin-Yang Genetics, or the HSE deCODE Controversy” (2001) 20:2 New Genetics and Society 103.
  4. National Geographic, “The Genographic Project: Frequently Asked Questions”, online: National Geographic https://genographic.nationalgeographic.com/genographic/lan/en/faqs.html visited on 24 February 2007.
  5. See http://www.ipcb.org; Luca Cavalli-Sforza, “The Human Genome Diversity Project: Past, Present, and Future”
  6. http://www.hapmap.org
  7. http://www.wellcome.ac.uk/en/genome/hg04b002.html visited on 24 February 2007 (no longer available online).
  8. Cindy Hamilton, “The Human Genome Diversity Project and the New Biological Imperialism” (2001) 41:2 Santa Clara Law Review 619-640.
  9. The UN Working Group on Indigenous Populations, 10th Session, July 1993.
  10. Erica-Irene Daes, Human Rights of Indigenous Peoples: Report of the Seminar on the Draft Principles and Guidelines for the Protection of the Heritage of Indigenous People, UN ESCOR, 52nd Sess., Agenda Item7, UN Doc. E/CN.4/Sub.2/2000/26 (2000)
  11. H Cunningham, “Colonial Encounters in Post-Colonial Contexts—-Patenting Indigenous DNA and Human Genome Diversity Project” (1998) 18:2 Critique of Anthropology 205.
  12. No less than twenty groups have issued sharp denunciations of the genetic testing projects. See Constance MacIntosh, “Indigenous Self-Determination and Research on Genetic Material: A Consideration of the Relevance of Debates on Patents and Informed Consent, and the Political Demands on Researchers” (2005) 13 Health Law Journal 213-251.
  13. 35 U.S.C. § 112 (1994)
  14. Richard Gold, ‘From Theory to Practice: Health Care and the Patent System” (2003) Health Law Journal 21-39.
  15. Ikechi Mgbeoji, “‘Patent First, Litigate Later! The Scramble for Speculative and Overly Broad Genetic Patents: Implications for Access to Health Care and Biomedical Research” (2003) 2 [2] Canadian Journal for Law and Technology 83-98.
  16. Tabitha Powledge, “Can Sequences Turn a Profit?” The Scientists (16 May 2002), online http://www.thescientist.com/news/20020516/03
  17. David Dickson, supra note 14; Declan Butler & Paul Smaglik, “Celera Genome Licensing Spark Concerns Over ‘Monopoly’” (2000) 403 Nature 231.
  18. Regents of the University of California v. Eli Lilly & Co., 43 U.S.P.Q.2d 1398 (Fed. Cir. 1997), cert. denied, 523 U.S. 1089 (1998).
  19. Karen Blochlinger, The Written Description Requirement and Claim Interpretation for Biotechnology Patents in the United States in Ikechi Mgbeoji & Ljiljana Biukovic, eds., IPRs in the 21st Century: Risks, Opportunities and Challenges [forthcoming] (UBC Press: Vancouver)
  20. Id.
  21. Id. at 1405.
  22. Id. at 1406.
  23. M Foster, “The Human Genome Diversity Project and the Patenting of Human Life: Indigenous Peoples Cry Out” (1999) 7 Canterbury Law Review 343-360.
  24. Cunningham, supra.
  25. Russel Barsh, “Pharmacogenomics and Indigenous Peoples: Real Issues and Actors” (2003-2004) 11 Cardozo Journal of International and Comparative Law 365-390.
  26. Patrick Tierney, Darkness in El Dorado: How Scientists and Journalists Devastated the Amazon (New York: Norton, 2000). See also, N. Rose, “Developing Our Links With China-Sociology and BIOS” (2004) 3:1 Social Research News 6 at 7-8.
  27. Havasupai Tribe et al. v. Arizona State University et al. Case No. CV-20040146 (d. Ariz. 2004)
  28. C. Weijer, “Benefit-Sharing and Other Protections for Communities in Genetic Research” (2000) 58 Clinical Genetics 367.
  29. B.M. Knoppers, M. Hirtle, & S. Lorneau, “Ethical Issues in International Collaborative Research on the Human Genome: The HGP and the HGDP” (1996) 34: 2 Genomics 272-285.
  30. Ikechi Mgbeoji, Global Biopiracy: Plants, Patents, and Indigenous Knowledge (Cornell University Press: 2006)
  31. Eric Beckenhauer, “Redefining Race: Can Genetic Testing Provide Biological Proof of Indian Ethnicity?” (2003/2004) 56 Stanford Law Review 161.
  32. MacIntosh, at 2.
  33. K Berg, “The Ethics of Benefit-Sharing” (2001) 59 Clinical Genetics 240

Advertisement



Understanding Science