Support Professionals and Students in the
Field of Developmental Disabilities

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 – Intellectual and Developmental Disabilities in the Genetics Era


Looking to the Future: Intellectual and Developmental Disabilities in the Genetics Era
Matthew J. Stowe, H. Rutherford Turnbull, III, Suzanne Schrandt and Jennifer Rack

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.



Narrating Normalcy: Disability, Medicine and Ethics
Christopher Newell

Exciting New Times Require us to Learn From our Past
Leslie Rubin

The Need for a Dialogue
Robert L. Schalock

Cultural Influences on the Future
Patricia Noonan Walsh

New Challenges, Better Opportunities and Outcomes in the Coming Decades
Climent Giné

Looking to the Past: Soma, Magical Thinking and the Implications of the New Genetics
Mark Rapley

Masking Eugenics as Science: A Critical Disability Studies Perspective of New Reproductive Technologies
Michael George Miceli and Jason Kenneth Steele

Missing the Forest for the Trees? A Disability Rights Take on Genetics
Tim Stainton

Should Science Strive to Correct Human Imperfections? A Moral, Ethical or Scientific Question
Trevor R. Parmenter



Pursuing the Vox Populi
Matthew J. Stowe and H. Rutherford Turnbull, III