Genetic Citizenship: Bench Scientists, Physicians and Patient Group Activism in the Shadow of the Genome
In the last two decades, genomic scientists, clinicians, and patient health groups have formed coalitions to produce new genetic knowledge. For three years, our research teams observed and interviewed among constituencies involved in finding genes for connective tissue disorders. New forms of science-health activism are emergent in the shadow of applying the human genome and producing the new genetic knowledge. We have entitled this activism "genetic citizenship" to underline the far-reaching aspiration for both biotechnological medicine and democratic inclusion of people with disabilities that are potentially embedded in such coalitions.
Department of Anthropology, New York University