Study finds research participants concerned about genetic discrimination

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Study finds research participants concerned about genetic

discrimination

26 May 2005 Medical News Today

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 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.