KU wins $915K grant to study effect of Human Genome Project on people with disabilities

LAWRENCE -- The National Human Genome Research Institute awarded the Beach Center on Disability at the University of Kansas a $915,000 grant to learn more about how people with disabilities view the ethical, legal and social implications of the Human Genome Project.

The Human Genome Project is a source of hope and cause for concern for people with disabilities and their families, said Matthew Stowe, assistant research professor, who will direct the three-year study, along with Beach Center co-directors H.R. "Rud" and Ann Turnbull.

"The project offers hope in the form of promising medical approaches to prevent, treat or even cure impairment, but it generates concern over the possibility of genetic discrimination, violations of privacy and even the specter of a new eugenics movement," he said.

"And not much has been done to bring the disability community into the public discourse on the Human Genome Project," he added.

The Beach project will be part of the unique Ethical, Legal and Social Implications Program that was built into the Human Genome Project in recognition of the awesome responsibilities of the new knowledge the genome project would generate.

The study will target individuals with developmental disabilities, mental illness and genetically linked disabilities, and their family members, service providers and policy-makers as a cross-section of the disabilities community with whom the Beach Center has longstanding ties across the country.

Stowe noted that a strength of the project would be the emphasis on the perspectives of underrepresented subgroups within the disability community -- low-income individuals, women, and ethnic and racial minorities.

The Beach researchers will conduct focus groups and interviews in Kansas City, Kan.; Kansas City, Mo.; New York City; Washington, D.C.; and Raleigh-Durham, N.C.

Finally, the researchers will analyze the concerns, expectations and opinions gleaned from the focus groups and interviews for their possible application to ethical, legal and social responses, educational initiatives and health care delivery practices.

"The Human Genome Project could blur the lines between what is a disability and what is not," Stowe pointed out. "As we learn more about our genetic potential for disease, for example, we may see that we are all, in some way, on a continuum of disability."

The Beach Center on Disability and the KU Center on Developmental Disabilities are two of the 12 research centers affiliated with the Schiefelbusch Institute for Life Span Studies, one of the largest research and development centers for the prevention and treatment of disabilities in the country.