Hostname: page-component-745bb68f8f-lrblm Total loading time: 0 Render date: 2025-01-11T22:49:07.873Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  01 January 2021

Éric Racine
Get access Rights & Permissions [Opens in a new window]

Extract

Population genomics seeks to better understand genomic diversity and variation at the level of populations. Numerous ethical questions are raised by large studies of human genomic diversity. First, at the level of ethical means, the confidentiality of the genetic data obtained and its handing (data banks, access, involvement of private sector, etc.) are challenging. Second, at the more fundamental level of ethical goals or ends, we find questions concerning the meaning and the interpretation of genetic knowledge. What shall we do with this knowledge? Who will decide research orientation and priorities? Ethical questions raised by population genomics imply those of “classical genomics,” but they have the additional ethical complexity of research done on populations. How should we take this particular aspect into account?

Type
Article
Information
Journal of Law, Medicine & Ethics , Volume 31 , Issue 3 , Fall 2003 , pp. 390 - 397
Copyright
Copyright © American Society of Law, Medicine and Ethics 2003

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

Habermas, J., “Discourse Ethics: Notes on a Program of Philosophical Justification,” Moral Consciousness and Communicative Action (Cambridge: MIT Press, 1991): 43–115, at 65.Google Scholar
Id. at 66.Google Scholar
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 (1337): 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.Google Scholar
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.Google Scholar
Joss, Durant, , supra note 3.Google Scholar
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.CrossRefGoogle Scholar
Foster, Bernsten, Carter, , supra note 6.Google Scholar
Comparison is founded on literature, official documentation, websites and answers obtained through personal communications from project representatives.Google Scholar
Greely, H.T., “The Human Genome Diversity Project: What About the Other Human Genome Project?,” Nature Reviews Genetics, 2 (2001): 222–27.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
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.,+at+section+IV.A.1.>Google Scholar
See supra note 6.Google Scholar
Other questions raised are: Who can legitimately consent for a community? What ethical and legal value has such consent?.Google Scholar
Declaration of Indigenous Peoples of the Western Hemisphere Regarding the Human Genome Diversity Project (1998), at <http://www.indians.org/welker/genome.htm>..>Google Scholar
Greely, , supra note 9.Google Scholar
Personal communication from a representative of the project to author (July 22, 2001).Google Scholar
All projects have a website open to questions. This element does not figure in the individual descriptions of each project.Google Scholar
Gulcher, J. Stefansson, J. Stefansson, K., “Ethics of Population Genomics Research,” Nature, 400 (1999): 307–08.CrossRefGoogle Scholar
And monopoly on commercialization.Google Scholar
Gulcher, J. Stefansson, J. Stefansson, K., “The Icelandic Healthcare Database and Informed Consent,” N. Eng. J. Med., 342 (2000): 1827–30.CrossRefGoogle Scholar
Gulcher, J. Stefansson, J. Stefansson, K., “An Icelandic Saga on a Centralized Healthcare Database and Democratic Decision Making,” Nature Biotechnology, 17 (1999): 620.CrossRefGoogle Scholar
Gulcher, Stefansson, Stefansson, , supra note 18.Google Scholar
Id.Google Scholar
Andersen, B. Arnason, E., “Iceland's Database is Ethically Questionable,” British Medical Journal, 318 (1999):1565.CrossRefGoogle Scholar
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>..>Google Scholar
I have not been able to verify the exhaustiveness of this information. Personal communication from a representative of the project to author (July 2001).Google Scholar
Abbott, A., “Sweden Sets Ethical Standards for Use of Genetic ‘Biobanks,’” Nature, 400 (1999): 3.CrossRefGoogle Scholar
Id.Google Scholar
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.>Google Scholar
Abbott, , supra note 27.Google Scholar
Personal communication from a representative of the project to author (August 20, 2001).Google Scholar
Frank, L., “Storm Brews Over Gene Bank of Estonian Population,” Science, 286, no. 5443 (1999): 1262–63, at 1262.CrossRefGoogle Scholar
Haldane, M., “Estonians Bet on Gene Pool,” National Post, June 16, 2001, at A16.Google Scholar
Human Genes Research Act, 2000, at <http://www.genomics.ee/index.php?lang=eng&show=20&sub=57>, (chapter 6, article 29 (3)).,+(chapter+6,+article+29+(3)).>Google Scholar
Frank, , supra note 31.Google Scholar
Personal communication from a representative of the project to author (July 31, 2001).Google Scholar
Dickson, D., “Partial UK Genetic Database Planned,” Nature Medicine, 6 (2000): 359–60, at 359.CrossRefGoogle Scholar
Wellcome Trust and Medical Research Council, Public Perceptions of the Collection of Human Biological Samples, (2000).Google Scholar
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.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.>Google Scholar
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).+(last+visited+September+10,+2003).>Google Scholar
Human Genetics Commission, Public Attitudes to Human Genetic Information: People's Panel Quantitative Study Conducted for the Human Genetics Commission, (2000).Google Scholar
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).Google Scholar
Id.Google Scholar
Id.Google Scholar
Id. at 28 (recommendation 19).Google Scholar
Id. at 30 (recommendation 21).Google Scholar
Id. at 30 (recommendation 22).Google Scholar
CARTaGENE, CARTaGENE Obtient l'approbation de Génome Québec, Press release obtained from project's promoters, (November 13, 2001), at 2.Google Scholar
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.,+at+1–3.>Google Scholar
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.Google Scholar
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.,+at+3–5.>Google Scholar
Id.Google Scholar
Id.; CARTaGENE, supra note 48.Google Scholar
CARTaGENE, supra note 48.Google Scholar
CARTaGENE, Questions et Réponses CARTaGENE, Réseau de médecine génétique appliquée, (2001), at 7.Google Scholar
CARTaGENE, supra note 55.; CARTaGENE, supra note 48.Google Scholar
CARTaGENE, supra note 55.Google Scholar
Id.Google Scholar
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.Google Scholar
Arnstein, S. P., “A Ladder of Citizen Participation,” American Institute of Planners Journal, 35 (July. 1969): 216–24.CrossRefGoogle Scholar
Id.Google Scholar
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.Google Scholar
See Arnstein, , supra note 60.Google Scholar
Foster, Bernsten, Carter, , supra note 6.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
Presentation inspired by Conseil de la Santé et du Bien-Être, supra note 62.Google Scholar