Journal on Developmental Disabilities

The Journal on Developmental Disabilities is a peer-reviewed journal with a growing regional and international readership.

Volume 13 Number 2	other issues
Intellectual and Developmental Disabilities in the Genetics Era	Editors / Table of Contents Introduction Article Looking to the Future Commentaries Narrating Normalcy Learn from Our Past The Need for a Dialogue Cultural Influences on the Future New Challenges, Better Opportunities Soma, Magical Thinking and Implications Masking Eugenics as Science Missing the Forest for the Trees? Science and Human Imperfections Response Pursuing the Vox Populi
Looking to the Future: Intellectual and Developmental Disabilities in the Genetics Era Matthew J. Stowe, H. Rutherford Turnbull, III, Suzanne Schrandt and Jennifer Rack
Abstract 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. download article >>

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