Narratives of Participation in Autism Genetics Research

Science, Technology and Human Values, Published online before print July 3, 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, three narratives of participation are analyzed, including the altruistic parent, the obligated parent, and the diagnostic parent. Although parents in this study were not generally concerned with bioethical principles such as autonomy and the issues of informed consent and/or privacy and confidentiality of genetic information, a critical analysis reveals contextual bioethics embedded within these different narratives. These include the negotiations of responsibility that parents confront in biomedical research, the misguided hope and expectations parents place in genomic science, and the structural barriers of obtaining an autism diagnosis and educational services. Based on these findings, 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.

Vanishing Diagnosis of Asperger’s Disorder

 Sociology of Diagnosis (Advances in Medical Sociology, Volume 12), 237-259, 2011

Purpose – This chapter discusses the proposed changes in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), which eliminates Asperger’s disorder (AD) and replaces it as “autism spectrum disorder.” Implications of these changes on the identity of adults with AD and the influence of everyday life experiences will be addressed.

Methodology/approach – This research is based on 19 interviews with adults diagnosed or self-diagnosed with AD. Central themes surrounding issues of identity and everyday life experiences were determined using grounded theory approaches.

Findings – This study demonstrates how the diagnosis and self-diagnosis of AD is fused with individual identity. It also shows how Asperger identity is positively embraced. The proposed changes to eliminate AD in DSM-V threaten these assertions of Asperger identity, which could potentially enhance stigma experienced by people with AD. Regardless of its removal, Asperger identity must be considered within the broader context of people’s everyday lives and how experiences in social interaction and communication can be strong agents of identity construction.

Social implications – The proposed changes to eliminate AD in DSM-V is a social issue that will impact individuals with Asperger’s and their families, as well as health-care professionals, health insurers, researchers, state agencies, and educational providers.

Originality/value of paper – This chapter offers a unique insight into identity construction based on the diagnosis and self-diagnosis of AD.

Trends in US Autism Research Funding

Journal Autism and Developmental Disorder, 39(5), 788-795, 2009.

This study shows that the number of autism research grants funded in the US from 1997 to 2006 significantly increased 15% per year. Although the majority of projects were concentrated in basic science (65%) compared to clinical (15%) and translational research (20%), there is a significant decrease in the proportion of basic research grants per year and a significant increase in the proportion of translational projects per year. The number of translational projects funded by the National Alliance for Autism Research and Cure Autism Now increased significantly, whereas the number of clinical projects significantly increased for the National Institutes of Health. In conclusion, this study demonstrates the shifting landscape of autism research from basic science to clinical and translational research.

Interacting and paradoxical forces in neuroscience and society

Nature Review Neuroscience, 8(February), 153-159, 2007.

Discoveries in the field of neuroscience are a natural source of discourse among scientists and have long been disseminated to the public. Historically, as news of findings has travelled between communities, it has elicited both expected and unusual reactions. What scientific landmarks promote discourse within the professional community? Do the same findings achieve a place in the public eye? How does the media choose what is newsworthy, and why does the public react the way it does? Drawing on examples of past challenges at the crossroads of neuroscience and society and on a case study of trends in one neurogenetic disease, autism, we explore the dialectical forces interacting in scientific and public discourse.