Providing Genetic Testing and Related Services Through the Private Sector:
A Workshop to Discuss Legal, Ethical and Policy Issues

November 18-21, 1999, Kananaskis, Alberta

Principal Investigator: Timothy Caulfield (Director of Research, Health Law Institute, University of Alberta)

Co-investigators: Michael Burgess,Bryn Williams-Jones

Funder:  MRC, Health Law Institute, University of Alberta and the Centre for Applied Ethics, University of British Columbia

Participants: Colleen Flood (Faculty of Law, University of Toronto), John Sproule (Health Policy Planning, Merck Frosst), Terry Owen(Helix Biotech), Jan Friedman (Department of Medical Genetics, University of British Columbia), Raisa Deber (Department of Health Administration, University of Toronto), Rhoda Lank (Annieville Elementary School, Delta, British Columbia), Mildred Cho (Centre for Biomedical Ethics, Stanford University), Usher Fleising (Department of Anthropology, University of Calgary), Mary-Ann Baily (Ethics Division, American Medical Association), Ruth Chadwick (Centre for Professional Ethics, University of Central Lancashire).

 

Goals

This Workshop sought to explore how genetic services are to be distributed in the complex environment of the current health care system. In particular, we wished to analyze the issues and make recommendations in relation to one possible component of the health services dissemination framework - the provision of genetic testing through the private sector. It is probably inevitable that genetic services will, on some level, be marketed and sold through the private sector. A limited number of private services are already available. Though there is a body of Canadian literature on the policy, economic, and legal implication of private health care, little has been written on privatization issues in the context of human genetics. This Workshop will begin a multi-disciplinary Canadian analysis of these issues.

 

Issues

Issues which are both unique to genetics and challenge current health policy doctrine, include:

What would be the impact of marketing (to patients and/or health care providers) and patient paid access on the overall uptake of genetic services?

How would the availability of private genetic testing affect the overall health care system (e.g., waiting lists, costs to the overall health care system)?

What impact will market forces, advertising and privately paid utilization have on the social definition of disease, disability and normalcy?

Would the regulation (and/or prohibition) of private reproductive genetic services, such as prenatal and preimplantation diagnosis, inappropriately interfere with reproductive autonomy?

What genetic services should be considered “medically necessary” and, therefore, covered by the public system?

Might genetic information be desired and used for non-health related reasons, such as stimulating discussions of managing finances related to declining income and institutionalization?

Is there an important difference in the counselling process between the private and public provision of services?

What is the relationship of private genetic services to the ongoing debate concerning the commodification and commercialization of the human condition?

 

Workshop Objectives

1) Through interdisciplinary discussion and analysis (including the production of brief background papers), identify the issues and concerns associated with the provision of genetic services through the private sector.
Specifically, we seek to identify both points of possible consensus and areas of disagreement which prevent the development of consensus. In addition, we will characterize disagreements as ethical (e.g., based on different weights given to effects of private testing), or fact-based (e.g., disagreement over the effects of private testing).

2) The clear articulation of policy options and, where possible, the production of recommendations for health care policy and research in relation to private genetic services.
Our conclusions will be made available to relevant policy making organizations including the new federal Canadian Biotechnology Advisory Committee, provincial health ministries and professional organizations (e.g., the Canadian College of Medical Geneticists).

3) Stimulate further Canadian debate on ethical and legal issues and design research that will facilitate the eventual design of sound social policy.
The investigators intend to use the workshop materials to design a project combining empirical and normative research that will produce recommendations for health care policy in relation to private genetic services.

 

Outcomes

Papers

Caulfield, T.; Burgess, M.M.; Williams-Jones, B. “Providing Genetic Testing Through the Private Sector: A View From Canada” ISUMA: Canadian Journal of Policy Research (in review).

Presentations

Williams-Jones, B.; Caulfield, T.; Burgess, M.M.

Providing Genetic Testing Through the Private Sector: A View From Canada
12th Annual Canadian Bioethics Society Conference: Medicine, Technology and Humanism: An Alliance Against Nature?
Québec City, QC, Oct. 19-22, 2000.