Abstract
Patient-paid access to commercialized genetic testing is currently available from Myriad Genetic Laboratories, Inc. through physicians who provide counselling, with direct billing to patients, co-payment, or with coverage by some insurance companies. Consumer interest in access to genetic tests has been heightened by news media attention, marketing, fund-raising efforts by disease-specific voluntary organizations, and the use of genetic tests in legal proceedings and in entertainment. This consumer interest in access to commercialized services is based on the perceived usefulness of the tests and frustration with current limits on access through the health care system. Additionally, some people would be willing to pay to receive greater protection of privacy through anonymous private genetic testing even if testing were available through regular health care insurance (Mehlman et al. 1996; Burgess et al. 1997). Three policy options are available: prohibition, a regulated market or an unregulated market.
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References
Arrow, K.J. 1963. “Uncertainty and the Welfare Economics of Medical Care” American Economic Review, Vol. 53, pp. 941–973.
Benjamin, C. et al. 1994. “Proceed with Care: Direct Predictive Testing for Huntington Disease” American Journal of Medical Genetics, Vol. 55, pp. 606–17.
Brunger, F. & Bassett, K. 1998. “Culture, Ethnicity and Genetic Testing” Socio-Ethical Issues in Human Genet-ics, B.M. Knoppers (Ed.), Cowansville, Quebec: Les Editions Yvon Blais Inc, pp. 7–42.
Burgess, M.M. & Hayden, M.R. 1996. “Patients’ Rights to Laboratory Data: Trinucleotide Repeat Length in Huntington Disease” American Journal of Medical Genetics, Vol. 62, pp. 6–9.
Burgess, M.M. et al. 1997. “Dilemmas of Anonymous Predictive Testing for Huntington Disease: Privacy vs. Optimal Care” American Journal of Medical Genetics, Vol. 71, pp. 197–201.
Burgess, M.M., Laberge, C. & Knoppers, B.M. 1998. “Ethics for Clinicians VIII: Genetics” Canadian Medical Association Journal, Vol. 158(10), pp. 1309–1313.
Bloch, M. et al. 1989. “Predictive Testing for Huntington Disease: II Demographic Characteristics, Life-Style Patterns, Attitudes, and Psychosocial Assessments of the First Fifty-One Test Candidates” American Journal of Medical Genetics, Vol. 32, pp. 217–24.
Caulfield, T. 1996. “Wishful Thinking: Defining Medically Necessary in Canada” Health Law Journal, Vol. 4, p. 63–85.
Caulfield, T. & Feasby, C. 1998. “The Commercialization of Human Genetics in Canada: An Overview of Policy and Legal Issues” Socio-Ethical Issues in Human Genetics, B.M. Knoppers (Ed.), Cowansville, Quebec: Les Editions Yvon Blais Inc., pp. 343–401.
Conrad, P. 1992. “Medicalization and Social Control” Annual Review of Sociology, Vol. 18, pp. 209–232.
Daniels, N. 1985. Just Health Care, Cambridge: Cambridge University Press.
Dillon P. 1998. “Conspiracy of Change” Fast Company, Vol. 18, pp. 182–195.
Evans, R.G., Barer, M.L. & Marmor, T.R. (Eds.). 1994. Why are Some People Healthy and Others Not? The Determinants of Health of Populations, New York: Aldine de Gruyter.
Evans, R. 1992. “The Canadian Health-Care Financing and Delivery System: Its Experience and Lessons for Other Nations” Yale Law and Policy Review, Vol. 10, pp. 362–396.
Freidson, E. 1970. The Profession of Medicine: A Study of the Sociology of Knowledge, New York: Dodd, Mead and Company.
Huntington’s Disease Collaborative Research Group 1993. “A Novel Gene Containing a Trinucleotide Repeat that is Expanded and Unstable in Huntington’s Disease Chromosomes” Cell, Vol. 72, pp. 971–983.
Knoppers, B.M., Caulfield, T. & Kinsella, D.T. (Eds.). 1996. Legal Rights and Human Genetic Material, Toronto:Emond Montgomery Publications Ltd.
Knoppers, B.M. 1991. Human Dignity and Genetic Heritage, Ottawa: Law Reform Commission of Canada.
Lippman, A. 1989. “Prenatal Diagnosis: Reproductive Choice? Reproductive Control?” The Future of Human Reproduction, C. Overall (Ed.), Toronto: The Women’s Press, pp. 182–194.
Loeben, G., Marteau, T. & Wilfond, B. 1998. “Cystic Fibrosis Screening Brochures: Variation in Presentation of Information about the Disease and Reproductive Options” American Journal of Human Genetics, Vol. 63, pp. 1181–1189.
Malinowski, M. 1996. “Capitation, Advances in Medical Technology and the Advent of a New Era in Medical Ethics” American Journal of Law and Medicine, Vol. 22, pp. 331–360.
Malinowski, M. & O’Rourke, M. 1996. “A False Start? The Impact of Federal Policy on the Genotechnology Industry” Yale Journal on Regulation, Vol. 13, pp. 163–254.
Mehlman, M.J. et al. 1996. “The Need for Anonymous Genetic Counseling and Testing” American Journal of Human Genetics, Vol. 58, pp. 393–397.
Meissen, G.J. & Berchek, R.L. 1987. “Intended Use of Predictive Testing by Those at Risk for Huntington Disease” American Journal of Medical Genetics, Vol. 26, pp. 283–293.
Nelkin, D. & Lindee, M.S. 1995. The DNA Mystique: The Gene as Cultural Icon, New York: W.H. Freeman and Co., pp. 1–18.
Ontario Law Reform Commission. 1996. Report on Genetic Testing. Toronto.
Quaid, K.A. & Morris, M. 1993. “Reluctance to Undergo Predictive Testing: The Case of Huntington Disease” Journal of Genetic Counselling, Vol. 45, pp. 41–45.
Rachlis, M. 1995. “Defining Basic Services and De-Insuring the Rest: The Wrong Diagnosis and the Wrong Prescription” Canadian Medical Association Journal, Vol. 152, pp. 1401–1405.
Rapp, R. 1988. “Chromosomes and Communication: The Discourse of Genetic Counselling” Med Anthropology Quarterly, Vol. 2, pp. 143–157.
Royal Commission on New Reproductive Technologies. 1993. Proceed With Care: Final Report, Ottawa: Minister of Government Services Canada.
Sawicki, J. 1991. Disciplining Foucault: Feminism, Power, and the Body, New York: Routledge.
Science Council of Canada. 1991. Genetics in Canadian Health Care, Ottawa: Minister of Supply and Services Canada.
Testart, J. 1995. “The New Eugenics and Medicalized Reproduction” Cambridge Quarterly of Healthcare Ethics, Vol. 4, pp. 304–312.
Webber, A.M. 1998. “Danger: Toxic Company” Fast Company; Vol. 19, pp. 152–161.
Wertz, D.C. 1995. “Professional Perspectives: A Survey of Canadian Providers” Professional Norms in the Practice of Human Genetics, Special Edition: Health Law Journal, Vol. 3, pp. 59–130.
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Burgess, M.M. (1999). Marketing and Fear Mongering. In: Caulfield, T.A., Williams-Jones, B. (eds) The Commercialization of Genetic Research. Springer, Boston, MA. https://doi.org/10.1007/978-1-4615-4713-6_12
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DOI: https://doi.org/10.1007/978-1-4615-4713-6_12
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