PhD study of genetic testing for breast cancer in the US and UK illustrates private vs public approach to genetic medicine

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TORONTO, April 20, 2001 -- A study comparing the development of genetic testing for breast cancer in the United States and the United Kingdom reveals very different attitudes in the two countries about public access to testing and to the intellectual property that makes testing possible.

"As attention turns more and more to the molecular basis of disease, it is important to understand how the first major genetic test was incorporated in the two countries at the forefront of genetic medicine," says the study’s author, Shobita Parthasarathy, a PhD candidate in the department of Science and Technology Studies at Cornell University. Parthasarathy will present her findings at noon on Tuesday, April 24 at York University, as part of the Brownbag Research Seminar series sponsored by the School of Analytic Studies and Information Technology at York.

"Understanding the role of politics and culture in breast cancer genetics provides us with insight into how genetic knowledge will be integrated into contemporary societies," says Parthasarathy. "When scientists in the United States and Britain announced that they had found the genes responsible for hereditary susceptibility to breast cancer, it was believed that the diagnostics and therapeutics developed as a result of these discoveries would usher in the next generation of genetic medicine."

She notes that activists, scientists, physicians, biotechnology companies, clinical laboratories, bioethicists, and government commissions are all vying to influence the politics of developing this new technology in both countries. "In the United States, genomics company Myriad Genetics, which was credited with discovering the first breast cancer gene (BRCA1), exerted patent rights over the gene discoveries and testing technology and eventually became the sole provider of the test, offering analysis of the genes at prices ranging from US$500 to US$3,000," says Parthasarathy. "The focus of testing was on the technical details of the gene sequencing analysis, as Myriad did not require individuals to undergo genetic counseling in order to gain access to the test."

She notes that in the United Kingdom, the British scientist who discovered the second breast cancer gene (BRCA2), chose to "defensively patent" the gene but provide the British National Health Service (NHS) with free access to the intellectual property. "As such, genetic testing for breast cancer in Britain was provided through regional genetics clinics funded by the NHS." Parthasarathy concludes that the British focus on risk assessment and counseling in the provision of genetic medicine encouraged the role of genetics clinics as legitimate providers of health care. She will present her findings in the Harry Crowe Room, Atkinson Faculty of Liberal and Professional Studies, York University, Keele Campus, 4700 Keele St.

The School of Analytic Studies and Information Technology in the Atkinson Faculty of Liberal and Professional Studies at York is a gathering point for economists, information technologists, mathematicians, scientists, and philosophers engaged in their own specialized domains but also committed to a shared, interdisciplinary discourse motivated by the convergence of several scholarly streams and by the emergence of new global and social structures.

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For more information, please contact:

Prof. Luigi Bianchi
Science and Technology Studies
Atkinson Faculty of Liberal and Professional Studies
York University
(416) 736-2100, ext. 33181
lbianchi@yorku.ca

Shobita Parthasarathy
(607) 256-2273
e-mail: sp73@cornell.edu

Susan Bigelow
Media Relations
York University
(416) 736-2100, ext. 22091 
sbigelow@yorku.ca
YU/051/01