The World's Fair sits down with Shobita Parthasarathy, author of Building Genetic Medicine: Breast Cancer, Technology, and the Comparative Politics of Health Care (MIT Press, 2007), Assistant Professor at the Gerald R. Ford School of Public Policy, and Co-Director of the Science, Technology, and Public Policy Program at the University of Michigan.
Shobita Parthasarathy's research focuses on the comparative politics of science and technology in the United States and abroad, with a focus on issues related to genetics and biotechnology. She is particularly interested in developing democratically engaged policy solutions to deal with the challenges posed by ethically and socially controversial technologies. She is the author of multiple articles and the book discussed below. Her current research compares the controversies over patenting medical and agricultural biotechnologies in the US and Europe, and explores whether and how patent systems should consider public concerns in its decision-making. She is also interested in how patient advocacy groups have become important players in the science, technology, and health policymaking process. For the 2007-2008 academic year, Parthasarathy is a Public Policy Fellow at the Woodrow Wilson International Center for Scholars in Washington, DC, and has also been awarded a fellowship from the American Council of Learned Societies. As well, most of us expect that she'll soon enough/eventually be the President of the Society for Social Studies of Science (4S). Figure, oh, maybe by 2019.
This is the seventh in our series of "Author Meets Bloggers" posts, where we talk to authors about their new work. (See them all here.) What follows is part one of a three-part conversation about Building Genetic Medicine. We encourage you to post questions or comments for Professor Parthasarathy and other readers.
THE WORLD'S FAIR: What is the central technology you examine in the book?
SHOBITA PARTHASARATHY: Genetic testing for breast and ovarian cancer, also known as BRCA testing. Interestingly, it's commonly known as genetic testing for breast cancer, even though the genes that are tested for mutations, BRCA1 and 2, are linked to both breast AND ovarian cancer. So, this raises additional questions about why the technology is known and discussed the way that it is...is it because of the power of the breast cancer activists? Is it because ovarian cancer is usually detected at a very late stage and has a very low survival rate (it's known as the silent killer), and therefore does not have much of a survivor-activist community? And you thought that was a simple question!
WF: What's your argument?
SP: I argue that the influence of national context is felt far beyond public policy and political debate to the level of practice, fundamentally influencing human genome science and technology. Through a comparison of how genetic testing for breast and ovarian cancer (known as BRCA testing) was built in the United States and in Britain, I develop three arguments. First, I demonstrate that national context plays an important role in the development of science and technology, not merely in terms of its regulation but also in terms of how practices and artifacts are shaped. Second, I complicate most predictions of our genetic future by showing that genetic medicine is being built quite differently according to national context and that these variations have important consequences for our lives and for health care. In particular, I show that these national differences in how breast cancer genetic science was conducted and understood and how BRCA-testing technologies were built have influenced how genetic medicine is organized and regulated, how users are envisioned, and how risks and disease are being defined and redefined. Finally, I argue that these deeply embedded national differences in science and technology can help to explain some of the challenges to transnational technology transfer that are beginning to occur around the world in domains such as trade, intellectual property, and drug safety.
WF: So what's the basic story? What path do you go down to talk about the differences in genetic science in Britain and the US?
SP: Why...I ease on down the road! No...seriously, in terms of its structure, it's a comparative case study that proceeds in a roughly chronological manner. I follow the development of BRCA testing in the US and Britain, including debates about the appropriate provision, use, and regulation of the technology among scientific and medical organizations, government advisory committees, and patient advocates, and describing the various testing systems that initially emerged in both countries. I then investigate the testing systems that eventually dominated in each country, and their implications.
WF: How do they differ?
SP: In Britain, the technology that eventually stabilized 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 laboratory test available to consumers on demand. Here, the clinical dimensions of the test were less important than the DNA analysis. The testing systems were also integrated into health care quite differently in the two countries, with different options being offered for risk management. (Tamoxifen was offered as a chemo-preventive drug for BRCA mutation-positive individuals in the US, but not in Britain.) I also explore the unsuccessful attempt by the American provider of BRCA testing to expand its service to Britain. British scientists, health-care providers, and patients rejected the American technology, I argue, because it was part of a social, economic, and political system to which they were not accustomed.
WF: For the science-seeking readers here, how would you say genetic testing helps explain the integration of science and technology, instead of their distinct identities?
SP: Genetics is actually a rather interesting case of how science and technology are inextricably intertwined. Genetic testing is possible as soon as a gene is found, but at that stage, very little is usually known about the qualities of the gene itself. So although a technology is available, ready for commercialization and possibly widespread use, not much is known about it and the research process is ongoing. At that stage, for example, people know little about how many mutations can occur in a gene, or what a mutation means for disease occurrence. What often happens is that the early research that leads to gene discovery is among families that have significant family histories of the disease, but once genetic testing is done in the general population, the average disease risk for someone with a gene mutation goes down significantly.
WF: What are the risk stats with BCRA genes?
SP: In the case of the BRCA genes, in the early days, they thought that a woman had a lifetime risk of 50-85% if she had a BRCA mutation, now it's more like 20-85% lifetime risk. Obviously, this kind of difference matters seriously, in terms of how you counsel patients and whether/how the test has any clinical utility.
WF: All cancer testing has ethical implications, but it sounds like a pretty direct issue with this case.
SP: That's right...not only is the scientific process not easily separable from the process of technological development, but the fact that they are intertwined raises important ethical and regulatory issues. When should a technology like genetic testing, which can be commercialized and used very early in the scientific research process, be made widely available? In the US, our approach so far is to leave decisions like this up to individual scientists, physicians, and companies, which means that these technologies are made widely available as soon as it is technically and economically feasible. But we should be asking ourselves whether this is appropriate, and whether we are willing to deal with the problems that such an approach generates.
Author-meets-bloggers I: Michael Egan, on Barry Commoner, science, and environmentalism.
Author-meets-bloggers II: Cyrus Mody on nanotechnology, ethics, and policy.
Author-meets-bloggers III: Saul Halfon on population policy, demographic science, and women's empowerment.
Author-meets-bloggers IV: Kevin Marsh on wilderness, forestry policy, and environmental politics.
Author-meets-bloggers V: David Hess on Alternative Pathways in Science and Industry
Author-meets-bloggers VI: Lizzie Grossman on e-trash and global environmental policy
- Log in to post comments