Study finds research participants concerned about genetic discrimination

WINSTON-SALEM, N.C. A new study the largest to date of public attitudes about genetic discrimination finds that 40 percent of people already undergoing genetic testing are worried that participation might affect their future insurance coverage.

"This study supports the view that public concerns about genetic discrimination are substantial," researchers from Wake Forest University School of Medicine and nine other centers write in the current (May-June 2005) issue of Genetics in Medicine.

The research team, headed by Mark Hall, J. D., reported that 40 percent of the 86,859 participants agreed with the statement: "Genetic testing is not a good idea because you might have trouble getting or keeping your insurance."

"Despite this concern, people were willing to be tested, and we didn't see any clear sign that this concern was a large deterrent to being tested," added Hall, Fred D. and Elizabeth L. Turnage Professor of Law at Wake Forest University and professor of public health sciences at the School of Medicine, part of Wake Forest University Baptist Medical Center.

All participants were involved in primary-care screening for iron overload or hereditary hemochromatosis (a metabolic defect causing accumulation of too much iron, leading to organ damage and other serious health problems), and all were told that they were being tested to see if they had too much iron in their blood or carried the genes for hereditary hemochromatosis.

The screening took place in Birmingham, Ala., Orange County, Calif., Washington, D.C., Honolulu, Hawaii, Portland, Ore., and London and Toronto in Ontario, Canada. All were participating in the HEIRS (Hemochromatosis and Iron Overload Screening) study, which has its national coordinating center at Wake Forest Baptist.

When the researchers broke down the huge study by ethnicity, they found African-Americans, at 30.24 percent, and Asians, at 25.14 percent, were less concerned about possi

Contact: Robert Conn
Wake Forest University Baptist Medical Center

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