Exposed Science. Sara Shostak. Читать онлайн. Newlib. NEWLIB.NET

Автор: Sara Shostak
Издательство: Ingram
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Жанр произведения: Медицина
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isbn: 9780520955240
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of the HGP predicted that it would provide a new understanding of “what it means to be a human being” (Bodmer & McKie 1997: vii) and a new sense of our biological possibilities. Simply put, there was a massive genetics bandwagon in the life sciences, replete with new questions, technologies, and training programs, all focused on the molecular vision of life (Fujimura 1996). NIH leaders heralded especially the “revolutionary” implications of molecular genetic and genomic research for clinical practice (Collins 1999).

      

      Environmental health scientists report that the ascendance of molecular genetic research in the life sciences raised concerns about the status of their research, which, on the whole, was not focused at the molecular level. Scientists recalled becoming alarmed by the perception that environmental health research was relatively “not innovative . . . not basic science driven” (Interview S20), especially compared to molecular biology. Such concerns about environmental health science being “behind the leading edge” (Field Notes, NIEHS 2002) had implications for the status and prestige of institutions that fund and implement environmental health research. In articulating his support of initiatives that focus environmental health research at the molecular level, a former director of the NIEHS explained:

      I think we were perceived as not being terribly mainstream and relevant, so we had to change. We had to incorporate modern science, take advantage of new innovations in cell and molecular biology and develop new test systems (Olden, Oral History Interview February 2004).

      Or, as molecular epidemiologist put it, by the 1990s, NIEHS was under considerable pressure to establish itself as more than just “a rat toxicology institute” (Field Notes, NIEHS June 2002). Indeed, although even critics aver that “rat toxicology” has made significant contributions to protecting public health and safety, many scientists assign it a lower status than “basic” laboratory research.34 According to a university-based environmental health scientist, starting in the 1980s, the NIEHS was not “getting as much money as it deserved”; one explanation for this is that it was perceived as “falling behind completely, compared to the rest of NIH” (Interview S20). Some respondents noted also that although the NIEHS has “great stature” by virtue of being part of the NIH, within the NIH, the NIEHS has to struggle to overcome being positioned as the “country cousins” (Interview P03) of the Institutes or “NCI [National Cancer Institute] South . . . a copy cat version” (Stone 1993); these are both derogatory references that refer to the NIEHS’s North Carolina location to impugn its scientific standing. At the NIEHS, I was told, “The genomics revolution is washing over us. Either we incorporate it or we’ll be left behind” (Field Notes, NIEHS July 2002).35

      

      At the same time that they rose to the myriad challenges of the genomic revolution, environmental health scientists had to find ways to incorporate genomics into their research in ways that would support their public health mission; as made vivid in their testimonies before Congress in 2007, this constitutes a primary rationale for their jurisdiction and funding. To be sure, environmental health scientists were not alone in seeking to articulate how the genomic revolution could contribute to public health. For example, in 1997, the Centers for Disease Control and Prevention (CDC) opened an Office of Genetics and Disease Prevention (now known as the Office of Public Health Genomics), which was tasked with developing strategies for “assist[ing] public health professionals in promoting health and preventing disease and disability among people for whom the consequences of an inherited risk can be ameliorated.”36 Throughout the late 1990s, the CDC sponsored a series of conference on genetics, public health, and disease prevention.37 In 2000, an edited volume, entitled Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease, presented “a framework for the integration of advances in human genetics into public health practice” (Khoury, Burke, & Thomson 2000). However, the assumption underlying these programs and frameworks was that “genetic information in public health is appropriate in diagnosing, treating and preventing disease, disability, and death among people who inherit specific genotypes.”38 Newborn genetic screening and predisposition testing of individuals from families affected by heritable conditions were oft cited models for how genetics could improve public health (see Khoury, Burke, & Thomson 2000). This individual-level focus on screening and behavior change fit well with the assumption that genomics would allow clinicians to customize interventions to individuals’ genotypes.39 However, it was not well aligned with the public policy and regulatory orientation of the environmental health sciences.

      In fact, the challenge of articulating the public health and public policy relevance of developing genomics in the environmental health sciences was accentuated by widespread predictions that the primary contribution of genomics to human health would be a profound personalization of clinical practice. “Personalized medicine”—that is, medical practice in which preventive screening, lifestyle, and dietary modifications, diagnostics, targeted drug therapies and family planning are all tailored to an individual’s genetic profile—is the holy grail of contemporary genomics research (e.g., Collins 1999; Feero, Guttmacher, & Collins 2008). Given that individual, clinical biomedical interventions are precisely what environmental health science traditionally is not, environmental health researchers were faced with the challenge of how to develop ways of engaging with genomics that strengthened their field, rather than increasing its marginalization.

      As we will see, there has been tremendous variation in scientists’ strategies for incorporating genomics into environmental health research, risk assessment, and regulation. Starting in the 1980s, and accelerating thereafter, environmental health scientists developed diverse molecular techniques and practices—such as environmental genomics, molecular epidemiology, and toxicogenomics—tailored to the specific questions and struggles at the center of their subfields, as well as the broader challenges posed by the contentious politics of the environmental health arena and the rise of molecular genetics.40 Although some of these practices built on extant lines of research, others aimed to establish wholly new research foci and techniques. Further, while many of these practices sought to articulate applications of genomics specific to the process of environmental health risk assessment and regulation, others sought to extend the reach of environmental health science into clinical settings, establishing new and potentially lucrative markets for environmental health research. Before turning to those specific practices, however, it is important to examine scientists’ broad rationale for the turn to research on gene-environment interaction spanning these fields. The next chapter describes how a “consensus critique” was used to mobilize the struggles and challenges of the environmental health arena in support of the idea that research on gene-environment interaction is essential to the public health mission of the environmental health sciences.

      TWO The Consensus Critique

      Now that we have a draft of the genome, the next big challenge is understanding how genes interact with the environment.

      Field Notes, NIH, 2002

      As long as the health and the environment . . . environmental health, is kept as a primary focus, then it [NIEHS] has a unique role.

      Testimony of Stefani Hines (US GPO 2007: 88)

      Under what circumstances would environmental health scientists see molecular genetic approaches to understanding human health and illness as an opportunity, rather than a threat to the jurisdiction and standing of their field? As one environmental health scientist put it, genetic research—especially as it was being “oversold” as the key to unlocking the mysteries of all human health and illness—appeared to many “as much as a barrier as a way to take action” (Interview S50). Following the publication of the first map of the human genome and the revelation that it contains many fewer genes than initially expected, environmental health scientists argued that genomic research had produced the unintended consequence of highlighting the importance of the environment to human health (Olden & White 2005).1 However, even in advance of this revelation, environmental health scientists had begun to advocate for the idea that gene-environment interaction was critical to understanding human health and illness. Notably, beginning in the mid-1990s, the leadership of the National Institute of Environmental Health Sciences (NIEHS) began promoting a research agenda