"Dendrogram showing 18 tumors from BRCA1 mutation carriers (black branches) and two tumors from BRCA2 mutation carriers (yellow branches)" (source).
Part II with Shobita Parthasarathy, author of Building Genetic Medicine, follows below. All entries in the author-meets-bloggers series can be found here.
WF: You've developed this intriguing approach, looking at technologies as architectures. Can you explain that a bit?
SP: I argue that technologies have specific architectures, which include their components and how they are fitted together. What appears to be the same technology--BRCA testing--can include different components and be fitted together in rather different ways and sometimes, even perform somewhat different functions. I introduce the concept of architectures for a few reasons. First, it provides us with a way of comparing technologies. We can look at things that appear to be the same technologies, break them apart, and determine what exactly is the same, and what is different. This also helps us start to understand why a technology might be built differently in different contexts. What exactly is similar or different? Can we relate these similarities/differences to the way the technology was built, and/or to the context within which it is built? Basically, it provides some specificity to discussions about how societies shape technologies. Second, thinking about technologies in terms of architectures also helps us understand how implications are embedded in technological design. Again, by breaking a technology apart, and comparing similar technologies to one another, we can think about how similarities and differences might shape how a technology is used and what implications it might have. We can trace ethical and social consequences to specific technological choices inside of a system. And, hopefully, with this knowledge, we can work towards making better technological choices that maximize social benefits and minimize risks throughout the developmental process.
WF: I see that the architectural metaphor allows you to do comparative studies, which helps explain why different cultural contexts have something to say about science and technology. You noted the importance of national context, specifically, in the first part of the interview, and how that matters in both the development and use of science and technology--but then I didn't give you a chance to explain more. It's a big point, and confronts assumptions about scientific neutrality or universality. I wonder if you would say more about it.
SP: Sure. We are accustomed to thinking about the influence of national context on policy differences, and in the area of health care, we might think about differences in funding or access to health care or technologies. But in the book, I demonstrate that in two countries that are incredibly similar to one another, where there are similar incidences of breast cancer and similar commitments to genetics and biotechnology research, this technology is built differently (down to different approaches to DNA analysis, meaning that your blood is tested differently in the US and UK) and the readings of scientific research is different (influencing the kinds of drugs that are available in each country to deal with breast cancer risk.) Indeed, there are not only differences, but these differences are important ones. I argue that these national differences in breast cancer genetic science and technology are due to a variety of structural and cultural factors, including different health care systems, different approaches to commercialization of science, and different traditions of patient advocacy.
WF: I'll keep pushing it: Do the differences in BRCA testing in the US and Britain really matter? Isn't it basically the same technology in two fairly similar countries?
SP: In the book, I demonstrate that the differences between the development and use of BRCA testing in the US and Britain are not just minor alterations, but are significant differences with important implications, which are driven by the distinct cultures, laws, and institutions in the two countries. For example, representatives of the American provider of BRCA testing, Myriad Genetics, assumed that their technology was objective and universal. They assumed that because breast cancer was as problematic in Britain as it was in the US, the British would welcome the company's technology because it was technically superior (it provided full-sequence analysis of both BRCA genes and was considered 99% accurate, in comparison to the DNA analyses that the British were doing as part of their BRCA testing services, which was 95-97% accurate.) What Myriad found when it tried to expand its testing service, however, was that the British challenged the accuracy of its test. How could this be, when Myriad's DNA analysis was better than the one used in the British NHS?
WF: The answer?
SP: It is because the BRCA testing service providers in Britain defined accuracy differently; to them, the test had both technical AND clinical components, in comparison to Myriad's test which focused on DNA analysis. The British also felt that Myriad's test simply would not fit within their context, where they had to worry about the long-term implications of the test and risk-management options as well as cost-effectiveness issues. So, in sum, BRCA testing wasn't a universal, objective technology. In fact, it was a technical system that was inextricably linked to specific political, social, legal, ethical, and economic understandings, which needed to be considered before transnational technology transfer could take place.
WF: Let me ask this: Breast cancer diagnosis and treatment might be put under the umbrella of the women's health movement (1970s and after), which itself may be considered part of the women's rights social movement. If national context matters, and the technology under investigation here is BRCA testing, in what way do you account for or draw from the different attention and importance in Britain and the US to women's health as a social movement as it relates to the eventual rise of genetic testing?
SP: This is an important element of my argument. Although there was a strong women's health movement in both the US and Britain, the two were somewhat differently focused. In the US, activists questioned the fundamental structures of biomedicine and health care provision that supported the system. They wanted greater control over their own bodies, and questioned what they perceived to be a paternalistic medical establishment. They felt that they had important expertise and understandings of their own bodies and medical conditions, and felt that that should be taken into account in health care practice and policies. In Britain, activists didn't challenge the overall system (and I should add that patient advocacy is simply a newer concept in Britain, so they weren't really as strong in the 1970s when their American counterparts were most active). British activists of the 1970s were happy that they had a National Health Service, which guaranteed each citizen equal access to care. They focused on getting more and better access to new technologies and services. They didn't question the technologies themselves as much, or their implications for women, they were more worried about getting access to them. The breast cancer advocacy movements rose from this foundation, and were relatively stronger in the US than in Britain. In the US, the National Breast Cancer Coalition famously achieved a significant increase in government funding for breast cancer research, and also raised awareness tremendously (they were able to recast the disease as an "epidemic", for example.)
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