Human Genome Project

In 1990, the U.S. Congress authorized a project to identify and "map" all the genes that make up human DNA. Genes are the biological unit of reproduction and help determine (along with environmental factors) our unique personality, health, appearance, abilities, and impairments. The mapping of the human genome promises to help scientists find better ways to identify, classify, treat and ameliorate, prevent, or even cure some biological causes of disability.

Yet the Human Genome Project also generates concerns about genetic discrimination, violations of privacy, eugenics, decreasing social supports, and other ethical, legal, or social consequences that may directly or indirectly reduce the quality of life of persons with disabilities and their families. Despite the potential impact of human genetic research on persons with disabilities and their families, members of the disability community have not been strongly represented in studies of the implications of genetic research.

What We're Doing

We investigated the perspectives of the disability community on human genetic research. By bringing together the perspectives and opinions of under-represented, grassroots members of the disability community, we identified the hopes and fears of persons with disabilities and their families. Additionally, we examined the sources, situations, and contexts related to each hope and each concern, and identify the responses—legal, social, education, or best practices—that might be used to facilitate the benefits of genetic research while addressing its potential to harm persons with disabilities and their families.