Standing on the Biological Horizon
Karen-Sue Taussig,¹ Rayna Rapp² and Deborah Heath³

¹Department of Anthropology and Global Studies, University of Minnesota

²Department of Anthropology, New York University

³Department of Anthopology, Lewis and Clark College

This paper examines the technosocial networks of association that have arisen as the Human Genome Project has brought molecular biology and medical genetics into public view and into the market. The interpolation of US citizens into genetic perspectives through their workplaces, civic lives, and family responsibilities as well as through their individual health statuses produces not only sites for eugenic discrimination, but also locations in which new forms of subjectivity and collective activism come into being. The paper demonstrates that cross-cutting alliances and shifting subjectivities among bench scientists, Washington lobbyists, corporate interests, and lay genetic advocates move beyond the singular solidarities of conventional identity politics. Emerging from these coalitions, genetic citizenship both marks and potentially transcends the medicalized identities of those living with rare and debilitating heritable conditions. It also reveals how the workings of contemporary science-in-society reconfigure traditional boundaries between state, home, market, and civil society. One of our aims is to locate new, or newly configured, sites for citizenship and claims on democracy that emerge from the sometimes uneasy coalitions of the present era. As chroniclers of the AIDS epidemic have taught us, health advocates with chronic, life-threatening diseases have had to face the challenges of crafting complex political-economic relations with the state and market in the quest for medical treatment, social services, and appropriate biomedical research. In this process, they have articulated demands for insider status in scientific controversies, and claimed credit for contributing to scientific advances. In their coalitional work, a generative mix of public and private resources has been assembled in the service of new citizenship claims.