The breast cancer gene Action Letter

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A Letter Sent to Mr. David Dingwall and Mr. John Manley

The Honourable Mr. David Dingwall
Minister of Health, Canada
Brooke Claxton Bldg.
Postal Code Locator 0916A
Ottawa, Ontario
K1A 0K9

The Honourable Mr. John Manley
Minister of Industry & Science, Canada
C.D. Howe Bldg., East Tower, 11th Floor
235 Queen Street
Ottawa, Ontario
K1A 0H5

Re: Patenting of the so-called "breast cancer gene"

Dear Mr. Dingwall and Mr. Manley

We are writing as an ad-hoc collection of academics and activists to bring some serious issues to your attention. We are deeply concerned by the current interest in genes and genetic tests for cancer "susceptibility". This has recently become a more urg ent issue with the efforts of Myriad Genetics, a US-based biotechnology company, to patent BRCA1 and BRCA2 and to make commercially available a genetic screening test. A recent article in Science which indicates that Myriad is sending 30,000 physicians a "detailed educational package on the fundamentals of genetic risks and a specific guide to interpreting cancer-gene tests", confirms our concern. (Science, Vol. 272, May 24, 1996, p. 1094).

We are writing to alert you to the many troubling issues that are raised by these recent efforts. Our concerns are of two main kinds:

  • we object to efforts to patent human parts, products or processes; and
  • we are deeply concerned by the proliferation of tests to screen for genetic "susceptibility"

We understand that the Disease Prevention Division within Health Canada has begun to examine these issues in greater detail. We suggest that it would be appropriate for the Ministry of Health to make efforts to ensure that this issue is examined with the full participation of representative women's groups and breast cancer survivor organizations.

We understand also that the Patent Office has begun addressing the issue of lifeform patenting in a case, currently under appeal, concerning the patenting of the so-called "Onco Mouse". We suggest that it would be appropriate for the Ministry of Industry and Science to make efforts to ensure that this issue is examined with the full participation of representative environmentalist, food policy, consumer and community groups.

In brief, our concerns about the issue of genetic screening are the following:

  1. Screening for the BRCA1 (or any other) gene is used for asymptomatic persons. The commercial interest in this test results from its potential to be used as a broad population screening device for millions of terrified women. The test offers nothing to these women. There are no proven treatments for women without the disease and the treatments that exist for women with the disease have failed to reduce mortality rates over the last fifty years. There is absolutely no justification - save a commercial one - for the use of this test in screening.
  2. The safeguards that would be necessary for this technique to be used are many; they exceed the list of protections usually identified of privacy, confidentiality and non-discrimination. In the first place, informed decision-making must be assured and this requires, at the very least, extensive and unbiased counselling. More to the point, the use of the technique requires a non-commercial. More substantively, however, this list of prerequisites fails to recognize the tremendous limitations of the lan guage of "privacy" when genetic testing is at issue. An individual cannot gather this information without implicating related kin. Finally, this list of prerequisites entirely fails to acknowledge the broader social issues at stake: geneticization, gene ticism, the individualization of blame, the diversion from issues of fundamental cause and primary prevention.
  3. Careful deliberation in public fora is essential before any approaches to genetic population screening for "susceptibility" are undertaken. If such testing becomes available, it may quickly become "standard practice" and thus impossible to remove or r educe.
  4. Finally, as Canadians, we fear that the promotion of genetic screening reflects an American model of health care that is oriented toward commercial delivery and consumption.

Our concerns about patenting can be stated more unequivocally

  1. We oppose the patenting of the breast cancer gene. We oppose any attempt to patent human genetic material by scientists, corporations or other entities.
  2. Furthermore, as citizens of a nation that has thus far refused to follow the lead of the American Patent Office, we oppose the export of American patenting standards to the rest of the world through international intellectual property rights (IPR) agre ements.

Sincerely

Fiona Miller, the Feminist Alliance on New Reproductive and Genetic Technologies, 150 Montgomery Avenue, Toronto, Ontario

Joan Grant Cummings, President & Sunera Thobani, past-President, the National Action Committee on the Status of Women, 234 Eglinton Avenue East, Suite 203, Toronto, Ontario

Maude Barlow, National Chairperson, the Council of Canadians, Ottawa, Ontario.

Madeline Boscoe, Women's Health Clinic, Third Floor, 419 Graham Avenue, Winnipeg, Manitoba.

Michelle Swenarchuk, Counsel, & Ken Traynor, Canadian Environmental Law Association (CELA), 517 College Street, Toronto, Ontario

Brewster Kneen, the British Columbia Biotechnology Circle, c/o P.O. Box 3028, Mission, BC

Judy Morrison, for the Vancouver Women's New Reproductive Technologies Coalition, c/o Political Science Department, Simon Fraser University, Burnaby, BC

Julie Kubanek, Vancouver Rape Relief and Women's Shelter, PO Box 21562, 1424 Commerical Drive, Vancouver, BC

Abby Lippman, PhD, Professor and Acting Co-Chair, Department of Epidemiology and Biostatistics, McGill University, Montreal, PQ.

Susan Sherwin, PhD, Professor, Department of Philosophy, Dalhousie University, Halifax, Nova Scotia.

Shree Mulay, PhD, Associate Professor, Department of Medicine, Director, McGill Centre for Research and Teaching on Women

Barbara Lent, MD, CCFP, Assistant Professor, Department of Family Medicine, University of Western Ontario, 60 Chesley Avenue, London, ON

Michele Ollivier, PhD, Assistant Professor, Department of Sociology, University of Ottawa, Ottawa, ON, and co-moderator of PAR-L (policy, action research, feminist electronic listserv)

Patricia Lee, PhD, Sessional Instructor and Researcher, Department of Anthropology, University of British Columbia, Vancouver, BC.