Building Genetic Medicine:
Breast Cancer, Technology, and the Comparative Politics of Health Care
MIT Press, 2007
Professor Parthasarathy's first book explores the development and implications of genetic testing for breast and ovarian cancer (BRCA testing) in the United States and Great Britain. It explores the international "race" to find the BRCA genes, the early competition among testing providers, the impact of the BRCA gene patents on testing provision and use, the integration of BRCA testing into health care, and the controversies over the BRCA gene patents in the two countries.
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Professor Parthasarathy shows how, even in an era of globalization, national context is playing an important role in the development and use of genetic technologies. Focusing on the development and deployment of genetic testing for breast and ovarian cancer (known as BRCA testing) in the United States and Britain, Parthasarathy develops a comparative analysis framework in order to investigate how national "toolkits" shape both regulations and the architectures of technologies and uses this framework to assess the implications of new genetic technologies.
BRCA testing was one of the most highly anticipated and publicized technologies of contemporary medicine. Parthasarathy argues that differences in the American and British approaches to health care and the commercialization of research led to the establishment of different BRCA services in the two countries. In Britain, the technology was available through the National Health Service as an integrated program of counseling and laboratory analysis, and was viewed as a potentially cost-effective form of preventive care. In the United States,although BRCA testing was initially offered by a number of providers, one company eventually became the sole provider of a test available to consumers on demand.
Parthasarathy also reports on an unsuccessful attempt by the American provider of BRCA testing to market its services in Britain. British scientists, health-care providers, and patients rejected the American technology, she argues, because it was part of a social, economic, and political system to which they were not accustomed. Parthasarathy draws lessons for the future of genetic medicine from these cross-national differences, and discusses the ways in which comparative case studies can inform policy-making efforts in science and technology.
AMP V. Myriad Court Case
Building Genetic Medicine influenced the 2013 US Supreme Court case AMP v. Myriad, which challenged the patentability of human genes.
Endorsements
Dirk Stemerding, Science, Technology, Health & Policy Studies, University of Twente, The Netherlands
"Combining historical, comparative, and coevolutionary perspectives, this book offers a highly original and informative account of the emergence of BRCA testing as a much debated and controversial new health care technology. It makes the reader vividly aware of the various ways in which technologies and practices of health care mutually shape each other."
Robert Cook-Deegan, Director, Center for Genome Ethics, Law, and Policy, Duke University
"Parthasarathy's book is a beautifully structured, clearly written Tale of Two Cultures. Testing for genes that confer risk of breast cancer was born of Mendelian genetic science and DNA analysis technologies, parentage revered on both sides of the Atlantic. As that genetic testing developed into clinical services, however, it turned out that the story was not just about who discovered what when, or even who owned which patents, but also about how decisions are made about health care technologies, health services, and public health. This story is thus a nonfiction Bildungsroman about a genetic innovation that developed quite differently in the United States and the United Kingdom, two cultures divided by a common science."
Stuart Blume, Chair, The Innovia Foundation for Medicine, Technology & Society, and Professor of Dynamics, University of Amsterdam
"The assumption that universally valid generalizations regarding the value of new medical technologies are possible, given good enough clinical evidence, is proving highly resistant to critique from the social sciences. Shobita Parthasarathy shows how and why genetic testing acquired quite different roles in the United States and in Britain, evoking very different responses from patient advocacy groups in the two countries. Her book is not only a valuable addition to the STS literature. I hope that everyone confronting the implications of rapid scientific and technological advance for health care provision will reflect carefully on what it has to say."
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Shobita Parthasarathy (October 22 2015.) “Awash in pink, but breast cancer awareness isn’t a cure.” [Updated]. The Conversation. (reprinted in The Huffington Post among other outlets)
Shobita Parthasarathy (October 22 2014). “Awash in pink, but breast cancer awareness isn’t a cure.” The Conversation.
Shobita Parthasarathy (September 12 2014). “Population Screening for BRCA: Is it the way forward for genetic medicine?” In UM Risk Science Center Blog.
Shobita Parthasarathy (2014). “Producing the Consumer of Genetic Testing for Breast Cancer: The Double-Edged Sword of Empowerment.” In Kelly Moore and Daniel Kleinman, eds. Handbook of Science, Technology, and Society. Routledge.
Shobita Parthasarathy (June 7 2013). “Permitting Ownership of Genes Stops Research”. In, Room for Debate: Can the Human Blueprint Have Owners?. The New York Times.
Shobita Parthasarathy (June 2 2013). “Cancer Survivor Day”, Author Q&A, MIT Press Blog..
Shobita Parthasarathy (2011). “Gene Patents and Democracy,” Nature Online.
Shobita Parthasarathy (2010). “The Implications of Direct-to-Consumer Genomic Testing for the Public’s Health: Taking Sociotechnical Architectures Seriously.” Genetics in Medicine. Vol 12, No. 9, p. 544-547.
Shobita Parthasarathy (2006). “Reconceptualizing Technology Transfer: The Challenge of Building an International System of Genetic Testing for Breast Cancer.” Shaping Science and Technology Policy: The Next Generation of Research, edited by David H. Guston and Daniel Sarewitz, University of Wisconsin Press.
Shobita Parthasarathy (2005). “Architectures of Genetic Medicine: Comparing Genetic Testing for Breast Cancer in the USA and UK.” Social Studies of Science. Vol. 35, No. 1, pp. 5-40.
Shobita Parthasarathy (2005). “The Patent is Political: The Consequences of Patenting the BRCA genes in Britain.” Community Genetics [now Public Health Genomics]. Vol. 8, pp. 235-242.
Shobita Parthasarathy (2004). “Regulating Risk: Defining Genetic Privacy in the US and Britain.” Science, Technology, and Human Values. Vol. 29, No. 3. pp. 332-352.
Shobita Parthasarathy (2003). “Knowledge is Power: Genetic Testing for Breast Cancer and Patient Activism in the US and Britain” in How Users Matter: The Co-Construction of Users and Technology. Nelly Oudshoorn and Trevor Pinch, eds. Cambridge, MA: MIT Press. pp. 133-150.