Discourse Ethics as an Ethics of Responsibilty: Comparison and Evaluation of Citizen Involvement in Population Genomics

Habermas J. , “Discourse Ethics: Notes on a Program of Philosophical Justification,” Moral Consciousness and Communicative Action (Cambridge: MIT Press, 1991): 43–115, at 65.

Id. at 66.

In the bioethics literature, see among others Goggin M.L. , ed., Governing Science and Technology in a Democracy (Knoxville: The University of Tennessee Press, 1986); Jennings B. , “Bioethics and Democracy,” Centennial Review, 34, no. 2 (1990): 207–25; Reiser S.J. , “The Public and the Expert in Biomedical Policy Controversies,” in Hanna K.E. , ed., Biomedical Politics (Washington, D.C.: National Academy Press, 1991): 325–31; Joss S. Durant J. , eds., Public Participation in Science: The Role of Consensus Conferences in Europe (London: Science Museum with the support of the European Commission Directorate General XII, 1995); Emmanuel E.J. , “Where Civic Republicanism and Deliberative Democracy Meet,” Hastings Center Report, 26, no. 6 (1996): 12–14; Gutmann A. Thompson D. , “Deliberating About Bioethics,” Hastings Center Report, 27, no. 3 (1997): 38–41; Sclove R.E. , “Better Approaches to Science Policy,” Science, 279, no. 5355 (1998): 1283; Leroux T. Hirtle M. Fortin M. Fortin L. , “An Overview of Public Consultation Mechanisms Developed to Address the Ethical and Social Issues Raised by Biotechnology,” Journal of Consumer Policy, 21 (1998): 445–81; Polkinghome J.C. , “Ethical Issues in biotechnology,” Trends in Biotechnology, 18 (2000): 8–10; May R.M. , “Science and Society,” Science, 292, no. 5519 (2001): 1021.

See Stewart J. Kendall E. Coote A. , Citizens' Juries (London: Institute for Public Policy Research, 1994); Crosby N. , “Citizen Juries: One Solution for Difficult Environmental Questions,” in Renn O. Webler T. Widemann P. , eds., Fairness and Competence in Citizen Participation (Dordecht: Kluwer, 1995): 157–74; Coote A. Lenaghan J. , Citizens' Juries: Theory and Practice (London: Fabian Society, 1997); Kuper R. , “Deliberating Waste: The Hertfordshire Citizens' Jury,” Local Environment, 2 (1997): 139–53; Smith G. Wales C. , “Citizen's Juries and Deliberative Democracy,” Political Studies, 48 (2000): 51–65.

Joss Durant , supra note 3.

See Foster M.W. Bernsten D. Carter T.H. , “A Model Agreement for Genetic Research in Socially Identifiable Populations,” American Journal of Human Genetics, 63 (1998): 696–702; Juengst E.T. , “Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous, and Practically Useless,” Kennedy Institute of Ethics Journal, 8, no. 2 (1998): 183–200; Reilly P.R. , “Rethinking Risks to Human Subjects in Genetic Research,” American Journal of Human Genetics, 63 (1998): 682–85; Foster M.W. Sharp R.R. Freeman W.L. Chino M. Bernsten D. Carter T.H. , “The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research,” American Journal of Human Genetics, 64 (1999): 1719–27; Weijer C. , “Protecting Communities in Research: Philosophical and Pragmatic Challenges,” Cambridge Quarterly of Healthcare Ethics, 8 (1999): 501–13; Weijer C. Emanuel E.J. , “Protecting Communities in Biomedical Research,” Science, 289 (2000): 1142–44; Juengst E.T. , “Commentary: What ‘Community Review’ Can and Cannot Do,” Journal of Law, Medicine & Ethics, 28 (2000): 52–54; Sharp R.R. Foster M.W. Morris W. , “Involving Study Populations in the Review of Genetic Research,” Journal of Law, Medicine & Ethics, 28 (2000): 41–51.

Foster Bernsten Carter , supra note 6.

Comparison is founded on literature, official documentation, websites and answers obtained through personal communications from project representatives.

Greely H.T. , “The Human Genome Diversity Project: What About the Other Human Genome Project?,” Nature Reviews Genetics, 2 (2001): 222–27.

Cavalli-Sforza L.L. Wilson A.C. Cantor C.R. Cook-Deegan R.M. King M.C. , “Call for a World-Wide Survey of Human Genetic Diversity: A Vanishing Opportunity for the Human Genome Project,” Genomics, 11 (1991): 490–91.

North American Regional Committee, Human Genome Diversity Project, “Proposed Model Ethical Protocol for Collecting DNA Samples,” Houston Law Review, 33 (1997): 1431–73, available at <http://www.stanford.edu/group/morrinst/Protocol.html>, at section IV.A.1.

See supra note 6.

Other questions raised are: Who can legitimately consent for a community? What ethical and legal value has such consent?.

Declaration of Indigenous Peoples of the Western Hemisphere Regarding the Human Genome Diversity Project (1998), at <http://www.indians.org/welker/genome.htm>.

Greely , supra note 9.

Personal communication from a representative of the project to author (July 22, 2001).

All projects have a website open to questions. This element does not figure in the individual descriptions of each project.

Gulcher J. Stefansson J. Stefansson K. , “Ethics of Population Genomics Research,” Nature, 400 (1999): 307–08.

And monopoly on commercialization.

Gulcher J. Stefansson J. Stefansson K. , “The Icelandic Healthcare Database and Informed Consent,” N. Eng. J. Med., 342 (2000): 1827–30.

Gulcher J. Stefansson J. Stefansson K. , “An Icelandic Saga on a Centralized Healthcare Database and Democratic Decision Making,” Nature Biotechnology, 17 (1999): 620.

Gulcher Stefansson Stefansson , supra note 18.

Andersen B. Arnason E. , “Iceland's Database is Ethically Questionable,” British Medical Journal, 318 (1999):1565.

This opposition movement is named Mannvernd, an association of Icelanders for ethics in science and medicine. See website for more details at <http://www.mannvernd.is/english/menu.html>.

I have not been able to verify the exhaustiveness of this information. Personal communication from a representative of the project to author (July 2001).

Abbott A. , “Sweden Sets Ethical Standards for Use of Genetic ‘Biobanks,’” Nature, 400 (1999): 3.

MFR (Swedish Medical Council), Research Ethics Guidelines for Using Biobanks, Especially Projects Involving Genome Research (1999), at <www.mfr.se/fileserver/index.asp?fil=J1SHVF2XTCCO>; Abbott , supra note 27.

Abbott , supra note 27.

Personal communication from a representative of the project to author (August 20, 2001).

Frank L. , “Storm Brews Over Gene Bank of Estonian Population,” Science, 286, no. 5443 (1999): 1262–63, at 1262.

Haldane M. , “Estonians Bet on Gene Pool,” National Post, June 16, 2001, at A16.

Human Genes Research Act, 2000, at <http://www.genomics.ee/index.php?lang=eng&show=20&sub=57>, (chapter 6, article 29 (3)).

Frank , supra note 31.

Personal communication from a representative of the project to author (July 31, 2001).

Dickson D. , “Partial UK Genetic Database Planned,” Nature Medicine, 6 (2000): 359–60, at 359.

Wellcome Trust and Medical Research Council, Public Perceptions of the Collection of Human Biological Samples, (2000).

Hapgood R. Shickle D. Kent A. , Consultation with Primary Health Care Professionals on the Proposed UK Population Biomedical Collection , report prepared for the Wellcome Trust and the Medical Research Council (April 2001), available at www.wellcome.ac.uk/en/images/GPreportFinaldoc_3984.pdf.

Human Genetics Commission, Whose Hands on Your Genes? A Discussion Document on the Storage, Protection and Use of Personal Genetic Information , (2000), at 26. However, members of the Human Genetics Commission have declared that the discussion was not representative and badly managed. See Perks B. , “Public Debate on Genetics Mishandled, Says expert,” BioMedNet News, at <http://news.bmn.com/news/story?day=010626&story=2> (last visited September 10, 2003).

Human Genetics Commission, Public Attitudes to Human Genetic Information: People's Panel Quantitative Study Conducted for the Human Genetics Commission, (2000).

People Science & Policy Ltd, BioBank UK: A Question of Trust: A Consultation Exploring and Addressing Questions of Public Trust, report prepared for The Medical Research Council and The Wellcome Trust, (March 2002).

Id. at 28 (recommendation 19).

Id. at 30 (recommendation 21).

Id. at 30 (recommendation 22).

CARTaGENE, CARTaGENE Obtient l'approbation de Génome Québec, Press release obtained from project's promoters, (November 13, 2001), at 2.

Laberge C. , “CARTaGENE? What is It?,” Newsletter, Map of Genetic Variation in the Quebec Population, available at <http://www.rmga.qc.ca/cartagene/doc/CARTaGENE.NEWS.1.2.pdf>, at 1–3.

Racine É. , “CARTaGENE: A Quebec Population Genomic Project Presented at a Montreal Workshop,” Newsletter, Map of Genetic Variation in the Quebec Population, available at <www.rmga.qc.ca>; 1, no.1 (August 1, 2001): 1–4, at 1.

Racine É. , “CARTaGENE: A Constructive Dialogue is Engaged: Comments Received Since the June 20th Workshop,” Newsletter, Map of Genetic Variation in the Quebec Population, <http://www.rmga.qc.ca/cartagene/doc/CARTaGENE.NEWS.1.2.pdf>, at 3–5.

Id.; CARTaGENE, supra note 48.

CARTaGENE, supra note 48.

CARTaGENE, Questions et Réponses CARTaGENE, Réseau de médecine génétique appliquée, (2001), at 7.

CARTaGENE, supra note 55.; CARTaGENE, supra note 48.

CARTaGENE, supra note 55.

Cardinal G. Deschênes M. Obadia A. Knoppers B. , Le Projet CARTaGENE: L'Encadrement Juridique et Éthique: Document de Discussion, Centre de recherche en droit public de Montréal, unpublished document, (2001), at 10.

Arnstein S. P. , “A Ladder of Citizen Participation,” American Institute of Planners Journal, 35 (July. 1969): 216–24.

de la Santé Conseil et du Bien-Être , Cadre de Référence de la Participation Publique (Démocratique, Utile et Crédible), Gouvernement du Québec (2000) at 13.

See Arnstein , supra note 60.

Foster Bernsten Carter , supra note 6.

Can we really count this feature of the project as an example of delegation given the strong minority opposition and the results of a survey indicating that only thirteen percent of the population thought they had a good understanding of the bill? See Andersen Arnason , supra note 24.

Since politicians do not have the right to vote in these committees, I do not consider this to be delegation in the full sense of the term, but equivalent to consultation.

This consultation mechanism is presented as a partnership since it aims to publicly obtain the perspective of citizens on the ethical approach and public support.

Presentation inspired by Conseil de la Santé et du Bien-Être, supra note 62.