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Center to study disability community views on Human Genome Project

Dec. 2, 2003 -- Researchers at the University of Kansas plan to analyze the concerns expressed by individuals with developmental disabilities, mental illness and genetically linked disabilities to the ethical, legal and social implications of the Human Genome Project. The University's Beach Center on Disability was recently awarded nearly $1 million by the National Institutes of Health's National Human Genome Research Institute to conduct the 3-year study, and will conduct focus groups and interviews in Kansas City, Kan.; Kansas City, Mo.; New York City; Washington, D.C.; and Raleigh-Durham, N.C.

"Not much has been done to bring the disability community into the public discourse on the Human Genome Project," said Matthew Stowe, assistant research professor, who will direct the three-year research project, adding that genetic research in general "generates concern over the possibility of genetic discrimination, violations of privacy and even the specter of a new eugenics movement."

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," according to a press release from the University of Kansas.

"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.

Contact: Matthew Stowe, Beach Center, (785) 864-0596;

Read the press release

Read story from the Nov. 25 Lawrence (KS) Journal World

Human Genome Project Information

Analyzing Genetic Discrimination in the Workplace (2001 remarks of then-EEOC Commissioner Paul Miller)









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