Does an Appeal to the Common Good Justify Individual Sacrifices for Genomic Research?
- 69 Downloads
In genomic research the ideal standard of free, informed, prior, and explicit consent is believed to restrict important research studies. For certain types of genomic research other forms of consent are therefore proposed which are ethically justified by an appeal to the common good. This notion is often used in a general sense and this forms a weak basis for the use of weaker forms of consent. Here we examine how the notion of the common good can be related to individual health, health care, and genomic research and we use this analysis to propose more precise criteria to justify forms of consent which diverge from the ideal standard.
KeywordsGenomics genomic research informed consent public intersest common good
- Anderson, B. and E. Arnason (1999). Iceland’s Database is Ethically Questionable. British Medical Journal 318:1565Google Scholar
- Burrows B. “Second Thoughts about U.S. Patent #4,438,032,” Bulletin of Medical Ethics, Jan 1997: 11–14.Google Scholar
- CIOMS. International Guidelines for Ethical Review of Epidemiological Studies. Geneva 1991, http://www.cioms.ch/frame_1991_texts_of_guidelines.htm
- CIOMS. International Ethical Guidelines for Biomedical Research Involving Human Subjects, Geneva 2002, http://www.cioms.ch/guidelines_nov2002_blurb.htm.
- Collins, F. Testimony before the Appropriate Subcommittee on Labor, Health and Human Services, and Education. U.S. Senate, July 11, 2001, http://www.genome.gov/10003483
- Council of Europe. Convention on Human Rights and Biomedicine. Article 2, 1997, http://conventions.coe.int/treaty/en/treaties/html/164.htm
- Dworkin R. (1992). “Liberal Community”. In: Avineri S., De-Shalit A. (eds), Communitarianism and Individualism. Oxford University Press, Oxford, UK, pp. 205–23Google Scholar
- Health Utilities Group (update 2006) “Health Utilities Index.” http://www.fhs.mcmaster.ca/hug.
- Jennings B., D. Callahan, and S. Wolf (1987) The Professions: Public Interest and Common Good. Hastings Center Report 17:S6Google Scholar
- Mannvernd, Association of Icelanders for Ethics in Science and Medicine. “The Icelandic Health Sector Database Act Stricken Down as Unconstitutional. A Landmark Decision by the Icelandic Supreme Court.” Iceland 2004, http://www.mannvernd.is/english/home.html.
- Pasini, N. and M. Reichlin. “Solidarity, Citizenship and Selective Distributive Justice in Health Care”. In Solidarity in Health Care and Social Care in Europe. Edited by Meulen Ruud Ter, Arts Wil, Muffels Ruud 309–32. Dordrecht: Kluwer Academic Publishers, 2001Google Scholar
- Streiner, D. and G. Norman. Health Measurement Scales. A Practical Guide to Their Development and Use. Oxford: Oxford University Press, 1995, p. 35. In Elly Stolk, Elles Goes, Esther Kok and Jan van Busschbach. Uitwerking Criteria Noodzakelijkheid, Eigen Rekening en Verantwoording en Lifestyle. Report added as appendix 2 to College voor Zorgverzekeringen, Breedte Geneesmiddelenpakket. Amstelveen: College voor Zorgverzekeringen, 2001.Google Scholar
- Taylor C. (1995) The Liberal-Communitarian Debate. In: T. Charles (eds) Philosophical Arguments. Harvard University Press, Cambridge MA, pp. 181–203Google Scholar
- Whitbeck, C. “A Theory of Health.” In Concepts of Health and Disease: Interdisciplinary Perspectives. Edited by A.L. Caplan, H.T. Engelhardt, Jr., and J.J. McCartney. Reading, MA: Addison-Wesley Publishing Company, 1981, 611–26Google Scholar
- World Health Organization, WHO Definition of Health. Geneva 1948, http://www.who.int/about/definition/en/
- World Medical Association. Declaration of Helsinki. (General Assembly). Tokyo 2004. Article 3. http://www.wma.net/e/policy/b3.htm