Journal on Developmental Disabilities

The disability community needs to become more aware and more involved in human genetics issues. This article is intended to highlight and discuss this need as it exists in the United States-although the issues discussed are often universal concerns. We begin by providing the context for our discussion with a history of the human genome project, medical science, and disability. We then discuss the limited role of disability community members in research and advocacy on genetic issues. We elaborate on these issues in six categories: (1) Health and medical; (2) attitudes and perceptions; (3) autonomy and self-determination; (4) discrimination or equality; (5) designing lives and the public health; and (6) family and society. We also discuss some of the existing responses that, through policy and practice, attempt to limit the harms and foster the benefits of genetic research in the United States. We conclude with our own recommendations for disability community involvement in genetics issues.