Multiple Autisms: Spectrums of Advocacy and Genomic Science (University of Minnesota Press, 2016)
This book maps out the social history of parental activism in autism genetics, the scientific optimism and failure of finding a gene for autism, and the various meanings attached to autism in the context of knowledge produced with emerging genomic technologies. Multiple Autisms reveals how parent advocates not only pushed for more autism science but also organized and governed autism genetic research initiatives. This in turn, influenced a shift in scientific practices and created new fields of exchange among scientists and families who participate in genetics research. The analysis also pays close attention to the social impacts of translating autism through a genomic lens by taking into account the various meanings and subjectivities developed based on autism genomic knowledge. This book demonstrates how despite the billion-dollar pursuit of unraveling the genetics of autism, the utility of genomic information has limited value in the immediate lives of people living every day with autism. Ultimately, Multiple Autisms argues that the persistent focus on genetics and now genomic science is fragmenting, reclassifying, renegotiating, and reinventing the social and scientific meanings of autism rather than determining a specific etiology of a single disease.
Participation in Genetics Research
A second line of inquiry investigates the social and moral implication of participating in genetics research based on over 25 interviews with parents who participated in a privately owned autism genomic database, the Simons Simplex Collection (SSC). Based on this research, she published an article, “Narratives of Participation in Autism Genetics Research,” in Science, Technology and Human Values (July 2014). This article provides empirical evidence of the social context and moral reasoning embedded within a parents’ decision to participate in autism genetics research. Based on in-depth interviews of parents who donated their family’s blood and medical information to an autism genetic database, this article demonstrates the limits of a principle-based approach to bioethics and the emergent forms of biological citizenship that takes into account the social situations of people’s lives and the moral reasoning they negotiate when participating in autism genetic research.
Commercialization of Genetic Testing
In the summer of 2013, I started a new project that investigates the commercialization of autism genetic testing. I am conducting a content analysis of websites, press releases and news articles of over a dozen private companies that are offering an autism genetic testing. Many of these genetic tests are based on rare, and in some cases spontaneous, genetic mutations (as opposed to common and inherited mutations). The genetic risk of autism is detected using new genomic technologies, which can scan over 100,000 genetic markers in one test. This project will investigate the problems associated with the commercialization of autism genetic testing, such as the validity of scientific claims; conflicts of interests in academic and private partnerships; and the bioethics of commercializing knowledge generated through public research investments and altruistic donations of genetic material.