Study Finds Research Participants Concerned About Genetic Discrimination

May 26, 2005

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 possible insurance discrimination than the over-all study average of 40 percent. However, 45 percent of Caucasians and 52.58 percent of Hispanics were concerned.

When the researchers looked at age, they found the greatest concern among those under 45. But concern rose as income increased.

“Public concern about insurance discrimination is seen as a major potential barrier to willingness to undergo genetic testing and has been cited as a strong reason for legal protection against insurance discrimination,” the researchers said.

The study aimed at learning the extent of these concerns. “The level of concern we found is similar to that found in previous studies of genetic testing participants, but is lower than the extent of concern found in previous nationally representative studies of the general population,” they said.

The research team noted, however, “The sample was composed of people who had already agreed to participate in a genetic testing study, so we might expect their views to be biased in favor of genetic testing.”

The researchers did find lower concern among participants over 65, and among the Canadians. “One possible explanation,” said Hall, “is that both groups are covered by social insurance for health care – such as Medicare.”

The HEIRS study is funded by the National Heart, Lung and Blood Institute in conjunction with the National Human Genome Research Institute.


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About Wake Forest University Baptist Medical Center: Wake Forest Baptist is an academic health system comprised of North Carolina Baptist Hospital and Wake Forest University Health Sciences, which operates the university’s School of Medicine. The system comprises 1,298 acute care, psychiatric, rehabilitation and long-term care beds and is consistently ranked as one of “America’s Best Hospitals” by U.S. News & World Report.

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