Diseases that involve complex gene-gene-environment interactions (e.g., asthma, diabetes, heart disease) are the next frontier for genetic medicine. The Mendelian gold rush of the previous single-gene model has given way to a vastly more complex scientific venture. 1 Researchers must now transform "the environment" and at risk "populations" into variables that fit biological analyses while keeping in mind the speculative futures of potential drug markets, public health concerns and careerist imperatives. Characterizing the social and cultural implications of complex disease genetics requires analyses that attend to the collaborative, transdisciplinary, and multisited networks of knowledge production.In this article, I detail the use of ethnic and racially classified DNA in the search for genetic susceptibility for type 2 diabetes. 2 Drawing on ethnographic research in wet (bench) and dry (computer) labs, at a DNA sampling field office on the U.S.-Mexico border and at scientific conferences, 3 I examine how the complicated social and biological meanings of race and ethnicity simultaneously shape the biomedical production and representation of diabetes knowledge. 4 By following DNA from its point of origin, through the pathways of knowledge production and into medicoscientific representations of diabetes knowledge, I illustrate that researchers use ill-defined ethnic taxonomies to parse populations and social history to rationalize their categorical choices. This results in a nuanced reiteration of biological human variation that naturalizes (Yanagisako and Delaney 1995) Mexicana ethnicity to explain diabetes etiology. In a process I call "bioethnic conscription" the social identities and life conditions of DNA donors are grafted onto the biological explanations of disease causality. ABSTRACTThis article is an examination of academic, corporate, and state-funded alliance of molecular, biological, computer, and clinical scientists who are conducting research into the genetic epidemiology of type 2 diabetes. Because type 2 diabetes affects human groups differently, researchers use ethnic and racial taxonomies to parse populations and social history to rationalize their categorical choices. In a process termed "bioethnic conscription, " the social identities and life conditions of DNA donors are grafted into the biological explanations of human difference and disease causality in both objectionable and constructive ways. Bioethnic conscription is presented as an ethnographically sound alternative to the either-or proposition of the (R)ace-no race debate within biomedicine and anthropology.
Adolescent and young adult cancer survivors face unique challenges not systematically addressed by cancer clinicians. Four focus groups and two individual interviews were conducted with 19 survivors to profile experiences and identify key concerns for future interventions. The resultant themes reflect cancer care continuum challenges (such as delays in diagnosis, problems with adherence), psychosocial concerns (such as infertility and reproductive concerns, changing social relationships, financial burden), and the paradox of being diagnosed with cancer as a young adult. Future intervention development for adolescent and young adult survivors should involve patient voices at each stage of the research process.
Current debate on the use of population genetic data for complex disease research is driven by the laudable goals of disease prevention and harm reduction for all, especially dispossessed, formerly enslaved, or colonized populations. This article examines one of the oldest gene-based theories of complex disease causation: the thrifty genotype hypothesis (THG). This hypothesis is emblematic of the way in which genetic research into complex disease attracts a high investment of scientific resources while contributing little to our capacity to understand these diseases and perpetuating problematic conceptions of human variation. Although there are compelling reasons to regard the high prevalence of type 2 diabetes mellitus as a by-product of our biological incapacity to cope with modern affluent and sedentary lifestyles, there is at present no consistent evidence to suggest that minority populations are especially genetically susceptible. Nor is it clear why such genetic differences would be expected, given the original pan-species orientation of the TGH. The limitations inherent in current applications of the TGH demonstrate that genetic research into complex disease demands careful attention to key environmental, social, and genetic risk factors operating within and between groups, not the simplistic attribution of between-group differences to racialized genetics. A robust interdisciplinary approach to genetic epidemiological research is proposed.
Proponents of community-based research advocate for the active involvement and engagement of community members, citing improved construct validity, intervention efficacy, and accountability. However, to create the conditions in which expertise is mutually constructed and in which no one is the object of research, a reconsideration of the fundamental ethos of community involvement and engagement is required. In this article, we seek to accomplish two goals: (a) to briefly assess the definitions of community health, focus groups, and dissemination that are often used in community-based research; and (b) to introduce an application of dialogical action that goes beyond traditional focus group methodology to promote the creation of an evolving and dynamic dialogue among campus and community stakeholders. An urban case study is presented.
Adolescents and young adults (AYAs) aged 15-39 at diagnosis have very low cancer clinical trial accrual rates. To date, no studies have examined attitudes toward clinical trial participation in this age range to determine if certain individuals are less likely to enroll if offered participation. The current study assessed attitudes toward participation using the Cancer Treatment Subscale of the Attitudes toward Cancer Trials Scales. Data were collected from a sample of leukemia and lymphoma survivors (=99) and a healthy college student sample (=397). Following a principal components analysis, two subscales-Personal Barriers/Safety and Personal Benefits-were retained for analysis. In the cancer survivor group, only 14 (13.3%) reported being offered participation in a cancer clinical trial, and only 8 of those 14 (7.6% of survivors) participated. Responses from leukemia and lymphoma survivors revealed no significant relationships between age, gender, race/ethnicity, clinical trial participation, insurance status, or social class with Personal Benefits or Personal Barriers/Safety. Healthy college females had more negative Personal Barriers/Safety attitudes compared to males after adjusting for race/ethnicity and social class (=0.01), but no associations were present when examining Personal Benefits as an outcome. This preliminary investigation suggests that drivers of attitudes toward clinical trial participation in AYAs are not well understood and may impact cancer trial participation. Future work should focus on defining attitudes toward cancer clinical trials in the AYA population and developing interventions to increase awareness, knowledge, and positive attitudes toward participating in cancer research.
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