Seeking Common Ground: A Forum for People with Disabilities and Genetics Professionals

The purpose of this project is to develop and host a workshop designed to bring people with disabilities, genetic disease health voluntary organizations and genetics professionals together to address a series of common concerns. Topics would include: the accessibility of genetic services for consumers with disabilities; the inclusion of disability issues (psycho-social, legal and political) in genetic counseling and medical training; issues of language and conceptualization of disability and how these may inform communication about genetic technologies; and civil liberties issues such as privacy, specifically as they affect individuals and families affected by a disabling genetic condition. The goal of the workshop would be to develop practical strategies that professionals and consumers can use together to address these issues. The meeting will be followed by the production and distribution of a written report on the meeting, and a guide for replicating the workshop, to be distributed to genetics professional organizations and disability advocacy groups. (Co-funded with DOE)