Paper short abstract:

This paper investigates the processes of participating in the largest privately owned autism genomic database. It examines the various subjectivities and collectivities shaped through participation and the anticipated biovalue generated through these emergent biosocial collectives.

Paper long abstract:

This paper investigates the social and scientific processes involved in participating and utilizing the Simons Simplex Collection (SSC), the largest privately owned autism genomic database. The SSC was funded and established by billionaires Jim and Marilyn Simons who have a daughter on the autism spectrum. The SSC consists of immortalized blood and comprehensive clinical evaluations of over 2,600 simplex families, each of which has one child affected with autism and unaffected parents and siblings. Based on interviews with 23 sets of parents who participated in the SSC and a content analysis of SSC promotional materials, newsletters, and scientific publications, this paper examines the various reasons families participated in the SSC, the subjectivities and collectivities shaped through their participation and continued participation through the virtual SSC Interactive Autism Network (SSC IAN), and the anticipated biovalue generated through these emergent biosocial collectives for both parents and scientists. For parents, the SSC provided access to a gold standard evaluation and an opportunity to be part of a national research endeavor designed to identify genetic causes of autism. For scientists, the SSC offered renewed expectations in alternative genomic explanations of autism, especially after failing to find a major autism gene. Further, this paper reveals how the SSC IAN serves as a new model of participation designed to not only create a virtual space for families to remain connected and engaged in the research process, but also a mechanism for scientists to maintain access to families whose data is the primary source of knowledge production.