Future insurability is an issue for genetic subjects
New study reveals fears about discrimination
The largest study yet of public fears about genetic discrimination found that 40% of people undergoing testing for a particular genetic disease were concerned that their participation could affect future access to insurance.1
The finding could have implications for people’s willingness to participate in genetic research, although fears of discrimination did not appear to be a deterrent in the group tested, says Mark Hall, JD, a professor of law at Wake Forest University in Winston-Salem, NC.
Hall, who specializes in health care law and public policy, notes the group being studied already was involved in genetic testing, and so could be seen as biased in favor of it.
The researchers also noted that a subject’s participation in a social insurance program such as Medicare or Canada’s national health care system had fewer concerns about genetic discrimination.
Hall had previously studied the issue of genetic discrimination by health insurers, concluding that it wasn’t occurring often, and that public fears of such discrimination exceeded the reality.
His group decided to learn more about those fears, piggybacking on an existing screening program for hereditary hemochromatosis, a metabolic disorder in which too much iron accumulates in the body, leading to organ damage and other health problems. The Hemochromatosis and Iron Overload Screening (HEIRS) Study was designed to discover how many people in the general population had the genetic condition.
Subjects were recruited for the screenings in Alabama; California; Washington, DC; Hawaii; Oregon; and Toronto. Once people were recruited for the screening, they were asked to fill out a questionnaire that asked their general attitudes regarding genetic testing.
More than 86,000 subjects filled out the questionnaire. Of that group, about 40% agreed with the statement: "Genetic testing is not a good idea because you might have trouble getting or keeping your insurance."
Among the possible reasons for concern about genetic testing, it ranked first, above concerns relating to genetic determinism (a feeling of helplessness that a genetic predisposition can’t be changed), impact on the family or feeling less healthy.
"The level of concern was broadly consistent with what we had expected and what has been found in other studies," Hall says. "But we were interested in going beyond just the surface level of concern to see where there were pockets of greater or lesser concern — whether the concern varied according to the legal landscape."
On the one hand, he says, people who were covered by Medicare or by Canada’s social insurance program, which covers all of its citizens, had less concern about genetic discrimination. For example, among those older than 65, who are covered by Medicare, only 31% believed that genetic testing could lead to discrimination.
"Legally, if you’re part of a social insurance system, you’re not going to be discriminated against," Hall says. "That’s part of the whole idea of a social insurance system." However, in looking at the differences between states that had specific laws prohibiting genetic discrimination and those that did not, there was no real difference in people’s attitudes, Hall says.
"Within that system of [state-specific] laws, the legal environment did not appear to matter," he says. "To the extent we were able to tell, it was no different in states with or without these legal protections."
Offering reassurances
One of the more unusual findings of the survey was the correlation between levels of education and concerns about discrimination. High school graduates had the lowest level of concern (36% agreeing with the statement), while respondents with both more and lesser education had more concern (of those with no high school diploma, 51%; of those with a college degree, 44%).
Authors described the finding as "puzzling," and warned that the education levels were guessed at from zip codes rather than measured directly in the study. "I think it needs further exploration," Hall says.
In interpreting the results of this survey, Hall says he’s tempted to say that the level of concern is excessive, given the demonstrated low incidence of actual discrimination by insurers on the basis of genetic testing.
He does think the results should cause research institutions to carefully review their informed consent processes when genetic testing is involved. Hall says that while it’s important to fully disclose the possible risks of testing, a good informed consent document should balance that with a description of the safeguards in place to protect subjects.
The consent form that participants in the HEIRS study saw stated that: "We will keep your identity . . . your blood test results, and anything you tell us confidential to the best of our ability. . . . To help insure your privacy, the National Institutes of Health has given us a Certificate of Confidentiality. This means that we cannot be forced to give any information about you to people who are not connected with the study, including courts, without your written consent. However, we cannot guarantee absolute confidentiality."
"I think it’s proper to note the risks and not downplay it," Hall says. "But it would be inappropriate not to tell people that there are protections in place."
He says his group plans to follow up with the participants in the HEIRS study to see if they have encountered any discrimination problems in obtaining employment or health insurance. So far, he says, most studies have supported his original research that showed very little actual genetic discrimination by insurers.
"The real concern is whether in the future it might get worse," Hall says.
Reference
- Hall, MA, McEwen JE, et al. Concerns in a primary care population about genetic discrimination by insurers. Genet Med 2005; 7(5):311-316.
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