The New Political Sociology of Science: Institutions, Networks, and Power

13. Creating Participatory Subjects: Science, Race, and Democracy in a Genomic Age

In April of 1993, Kenneth M. Weiss, molecular anthropologist and incoming chair of the North American Regional Committee (NAmC) of the Human Genome Diversity Project, explained in a letter to the U.S. Congress: The National Institutes mandates affirmative action in all of its research grants, to ensure that all of our nation’s people are served by the research and clinical establishment. How is it that we can allocate vast sums of money to studying human genes [the Human Genome Project] in a way that specifically excludes consideration of relevant diversity? (Weiss 1993: 44; emphasis added) The Diversity Project, Weiss argued, would correct for this exclusionary “Eurocentric” tendency of the Human Genome Project in two ways (Bowcock and Cavalli-Sforza 1991; Human Genome Organization 1993). First, it would diversify the populations from which scientists collected DNA—in addition to “Caucasians,” it would sample indigenous populations and “major ethnic groups” in the United States (Weiss 1993,: 44).1 Second, it would seek to “partner” with the diverse populations 351 13 Creating Participatory Subjects Science, Race, and Democracy in a Genomic Age   they sought to sample, including them in the project’s design and regulation . In short, organizers envisioned an “affirmative action” project in the fullest sense: one that sought to include all races and ethnicities as both objects and subjects. From one perspective, this episode might count as a success story for democratization and might illustrate American scientists’ changing relationship with citizens. Rather than maintaining a wall that divides science and civil society, Diversity Project organizers’ efforts to include and “partner” with diverse populations might represent a positive step toward equalizing power relations between scientists and laypeople and toward building research based on the democratic values of participation and inclusion. However, the story of the Diversity Project troubles this hopeful narrative. Rather than embracing project organizers’ efforts to promote their participation, many potential subjects resisted their efforts. This chapter illustrates why. In so doing, it seeks to reframe debates about participation and science by highlighting the fundamental questions about the constitution of subjects and the operation of power at stake in even the best-intentioned efforts to “democratize” science. To date, scientists, policymakers, and academics alike have largely overlooked these consequential questions. Instead, in their accounts, participation figures as an a priori good—a practice designed to promote the inclusion of subjects in processes of knowledge production from which they have been wrongly excluded (Sclove 1995; Kitcher 2001). In Weiss’s statement these subjects are members of “major ethnic groups.” In the philosopher of science Phillip Kitcher’s call for “wellordered science,” a science that is consistent with democratic values, these subjects are “women, children, members of minorities, and people in developing countries” (Kitcher 2001:117–135). It is the exclusion of these subjects that primarily concern Weiss, Kitcher, and other scientists and scholars of science. In this chapter I argue that while a focus on inclusion of subjects is laudable, those committed to social justice could gain much by beginning their critique one step earlier, at the point of subject formation—at the point of defining who, for example, is a member of a “major ethnic group” like “African American,” and who can legitimately define and speak for such a subject’s interest. As the theorist of power Michel Foucault and political theorists inspired by his work have ably demonstrated , forms of power particular to liberalism tie one’s formation as a subject who can act and participate in society (i.e., subjectivity) to 352   institutionalized forms of subjection (or control by another) (Foucault 1977; Butler 1992; Cruikshank 1999:21). Consequently, these social theorists demonstrate, participation is not an innocent act. Instead, it is an institutionalized governmental practice that expresses some values and interests while excluding others.2 This is particularly evident in cases like the Diversity Project, where researchers and potential research subjects do not share the same cultural values and structural positions in society. To date, most literature on lay participation in research has focused on the activities of members of disease groups, such as breast cancer and AIDS activists (Epstein 1996; Klawiter 2000). These activists, for the most part, are white, middle to upper class, and well educated, and are likely to share values and interests with researchers who are also predominantly white, middle to upper class, and well educated (Epstein 1991; Klawiter 2000). In these cases, the manner...