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Ethical Issues
  GENTIC HEALTH SPECIAL FEATURE:
Genetic Discrimination: Myth
or Reality?

By Michele Simon, JD, MPH





Genetic discrimination is a phrase that can evoke a host of fears from anyone who has a genetic condition or is currently contemplating genetic testing. These concerns include fear of not getting or losing health insurance benefits; fear of losing a job or promotion; or fear of private information becoming public. Many health professionals are concerned that at-risk populations are forgoing genetic testing, and are thus losing out on potential benefits. In fact, studies show that a majority of genetic counselors believe that discrimination by health insurers is widespread and common. However, experts are divided over whether significant evidence of genetic discrimination currently exists.

 
 
 

The Case for Discrimination

Anecdotal evidence tends to indicate a problem worthy of additional investigation.
The answer to how much genetic discrimination currently exists depends on several factors, including who you ask. Complicating matters is the problem of distinguishing between two different, but related, potential arenas for discrimination — health insurance and employment. Also, documenting cases of genetic discrimination is problematic because it's difficult to prove and many people are afraid to come forward. As a result, it's hard to collect publishable data to document that a problem currently exists. So we are left mostly with individual cases. But some experts say we have enough reports of genetic discrimination to create cause for concern. Here's a sampling of the evidence:
  • A 1995 survey of people with a known genetic condition in their family found that 22 percent reported being denied health insurance because of their genetic status, whether or not they were already sick.

  • A woman with a family history of Huntington's disease tried to apply for health insurance. The company wanted her to prove she didn't have the mutation, but she didn't want to know. She couldn't get coverage without the test.

  • Another woman's mother had Huntington's. When her employer found out about her plans to get tested, he fired her because of the potential costs of employing someone with the disease.

  • Terri Seargent was identified as having Alpha-1, a genetic disorder that can affect the lungs and/or liver. When her employer received a bill for her first preventive treatment, he abruptly fired her, despite having always referred to her job performance as exemplary. Someone with the gene for Alpha -1 will not necessarily become symptomatic. Nevertheless, according to the Alpha-1 Association, at least 30 people have been denied private health or life insurance because of their genetic status.

How much these reports and others like them indicate a more widespread problem isn't quite clear. It's possible that these stories are exceptions rather than being indicative of a trend. Researchers refer to individual cases as "anecdotal evidence" and tend to give them less weight than studies that collect data and then report statistically significant results. However, anecdotal evidence tends to indicate a problem worthy of additional investigation.

"Discrimination is probably going to increase because current laws are ineffective." - Jeremy Gruber, National Workrights Institute
Jeremy Gruber is with the National Workrights Institute, a member of the Coalition for Genetic Fairness. He says that although most of the evidence right now is anecdotal, it is substantial: "Just because it's anecdotal doesn't mean that it doesn't exist or that it should be questioned. While it's not widespread, there are no signs of it abating. In fact, it's probably going to increase because current laws are ineffective to protect people."

In an effort to monitor and document reports of genetic discrimination and privacy abuse, the Genetic Alliance, a non-profit genetic advocacy group, is conducting a survey. The Alliance says they have received over a hundred surveys so far that indicate some form of discrimination. Although they have not yet been able to publish their data, implementation of the survey is ongoing.

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The Case Against Discrimination

"Insurers aren't collecting genetic testing information, or even family histories." - Mark Hall, Wake Forest University
In one of the few published studies of genetic discrimination, Mark Hall, Professor of Law and Public Health at Wake Forest University, examined health insurance policies. Hall set out to study the effectiveness of state genetic discrimination laws, expecting to learn about the pattern of insurance discrimination, but discovered there was very little discrimination to begin with. He studied individual plans and small group plans, reviewing 150 insurance application forms. He found only two cases of insurers asking about genetic conditions. He explains: "The insurers aren't collecting genetic testing information, or even family histories very much. I interviewed actuaries and underwriters and they said that this sort of information just isn't very useful for their analysis. And this caught me by surprise."

Hall also had someone pose as a potential insurance enrollee who had a breast cancer gene. Most insurance agents — 85 percent — said this would not be a problem. A few said it might mean the rates would be higher, but would not deny a policy. "So that's not so bad; you just have to shop around a bit," says Hall.

"To my knowledge, there has not been a single case of insurance discrimination based upon genetic information." - Allan Bombard, Aetna U.S. Healthcare
According to Allan Bombard, MD, one of four women's health medical directors at Aetna U.S. Healthcare and a medical geneticist, the information gained from genetic testing or family history is not being used to discriminate against members by health insurers. "I think there is a wide misperception about how the information is used. To my knowledge, there has not been a single case of insurance discrimination based upon genetic information."

Gruber admits that genetic discrimination among health insurers is not standard practice, but says it's still a problem: "An insurance company would not be so bold as to put a question on application, but it's going on individually. They will never admit it, but if the health insurance companies really weren't interested in this, why have the insurance lobbies invested significant time and money into weakening and sometimes killing genetic discrimination protection laws in various states?"

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Future Potential and the Fear Factor

Regardless of how much discrimination is currently going on, the potential exists for more in the future.
Most experts can agree that regardless of how much discrimination is currently going on, the potential exists for more in the future, as genetic testing becomes less expensive and more widespread. They also agree that fear of discrimination is a major problem and that the best solution is increased education efforts and passing better discrimination protection laws.

Bombard is particularly concerned about people foregoing valuable testing. "In my experience, some women will refuse testing for the breast cancer gene despite her family history, due to fear. If people aren't willing to use the information, they will never be able to get truly preventive care; it will be a lost opportunity. We doctors need to educate people about this. People don't understand it, so they are fearful."

"If people aren't willing to use the information, they will never be able to get truly preventive care." - Bombard
Paula Gregory, Ph.D. is director of outreach and education in human cancer genetics at Ohio State University. She predicts major changes ahead because we won't just be talking about a few rare diseases. "We will soon discover that everyone's at risk for something. And just how are insurers going to discriminate against everyone who has a high risk of heart disease," she wonders.

Gregory is especially concerned about diseases such as breast cancer where the risk is less clear than say, Huntington's disease. "The real question is how the information is going to be interpreted. With breast cancer, the gene mutation really just indicates susceptibility and sometimes we get ambiguous results. The insurance companies can't know what it means because the geneticists don't."

Hall predicts that discrimination protection laws could have the greatest impact in forestalling discrimination in the future.
In his study, Hall asked health insurers about future plans: "About half said they don't see this ever really being an issue. The other half said we're not doing it now, but it could happen if the information is valuable, if our competitors start using it, they may be forced to use it do too. So the views are split." Hall predicts that discrimination protection laws could have the greatest impact in forestalling discrimination in the future.

Gruber agrees, saying that if we act now, we could prevent discrimination from getting worse. "Unfortunately, due to the lack of overwhelming evidence of a problem, it's not getting proper attention, especially at the federal level. But we have a real opportunity, probably for the first time in the history of this country, to enact legislation before discrimination becomes widespread. This isn't the type of situation we had when we enacted civil rights legislation after hundreds of years of discrimination. We can prevent this before it occurs."

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References

Buelow, N. (2000). Genetic Discrimination: The Alpha-1 Case. on the World Wide Web: http://www.ramazziniusa.org/geneticdiscrim.htm.

Genetic discrimination and health insurance: A Case study on breast cancer. (1995). Bethesda, Maryland, 11 July, workshop sponsored by the NAPBC and the NIH-DOE Working Group on the ELSI of Human Genome Research.

Hall MA, Rich SS. (2000). Laws restricting health insurers' use of genetic information: impact on genetic discrimination. Am J Hum Genet. Jan;66(1):293-307.

Kass NE. (1997). The implications of genetic testing for health and life insurance. In Rothstein MA (Ed.), Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic ErDCW (pp. 299-316). Yale University Press.

Personal communication. (2000). Paula Gregory, PhD, Assistant Professor, Ohio State University.

Personal communication. (2000). Allan Bombard, MD, Women's Health Medical Director, Aetna U.S. Healthcare.

Personal communication. (2000). Jeremy Gruber, National Workrights Institute.

Personal communication. (2000). Nancye Buelow, Secretary of the Genetic Alliance and President, Alpha-1 Association.

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