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Ethical, Legal and Social Implications of Autism Research

Although research represents a huge component of the national conversation about autism, very little attention has been paid to the ethical issues posed by new developments in autism research and the ways in which this research is frequently conducted. To address this concern, ASAN has just received a grant from the Administration on Developmental Disabilities to conduct a new program relating to Ethical, Legal and Social Implications (ELSI) of Autism Research. The project will focus on ethical concerns in autism research, such as prenatal testing, community participation in research methodologies, appropriate and inappropriate intervention goals, enhancing the effectiveness and inclusivity of Institutional Review Boards, setting diagnostic criteria, and balancing competing concerns of safety and self-determination. ASAN will launch the project in December at Harvard Law School with a Symposium of researchers, self-advocates, family members, and activists.

Following this, ASAN will work with symposium participants to produce a series of policy briefs outlining these issues and providing a framework for future action on the part of researchers, policymakers, and community partners. To broaden the scope of this discussion, accessible language versions of these briefs will be developed and included in dissemination. As part of this project, ASAN will be collaborating with the Harvard Law Project on Disability and the Petrie-Flom Center for Health Law, Biotechnology and Bioethics. ASAN’s ELSI project is particularly timely given the National Institutes of Health September symposium on the same topic, which included ASAN Staff Member Paula Durbin-Westby and Friends of ASAN Christina Nicolaidis and Liz Pellicano.

If you are interested in playing a part of this project or in learning more as our plans develop, please contact aneeman@autisticadvocacy.org.

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