Genetic Discrimination in Health Insurance
What is the issue?
More than a decade of research on the human genome has yielded a wealth of information. Scientists have mapped and sequenced the genome, identified individual genes or sets of genes that are associated with diseases ranging from Alzheimer's to diabetes and certain forms of cancer, and developed genetic tests to determine an individual's predisposition for some of these diseases. Developments and discoveries like these - and others likely to come in the years ahead - offer hope that many deadly illnesses can be diagnosed, treated and perhaps even cured both earlier and with better results than is now possible.
By learning more about their genetic makeup and susceptibility to certain diseases, people now have more choices, and potentially more control, when dealing with their health and future. Genetic information may lead people to ask their physicians to screen them regularly for certain diseases, to take preventive measures earlier in life, or even to rethink their reproductive plans and choices.
But genetic information can also be misused. It can be used to discriminate against people in health insurance and employment. People known to carry a gene that increases their likelihood of developing cancer, for example, may get turned down for health insurance. Without health insurance, it may be impossible for some people to get treatment for a disease that could be fatal. This may lead some people to decide against genetic testing for fear of what the results might show, and who might find out about them. It also could lead some people to decline participation in biomedical research such as studies of gene mutations associated with certain diseases that examine the history of families prone to those maladies.
Each of us probably has half a dozen or more genetic mutations that place us at risk for some disease. That does not mean that we will develop the disease, only that we are more likely to get it than people who do not have the same genetic mutations we do. As our knowledge of the human genome increases, more and more people will likely be identified as carriers of mutations associated with a greater risk of certain diseases. That means that virtually all people are potential victims of genetic discrimination in health insurance.
What are the public concerns?
As a result, Americans have become concerned about the possible misuse of genetic information, especially in health insurance and employment. A Time magazine/Cable News Network (CNN) poll, published in June 2000, found that 75 percent of those surveyed would not want their insurance company to have information about their genetic code. A 1998 survey released by the National Center for Genome Resources (NCGR) found that 85 percent of those polled think employers should not have access to information about their employees' genetic conditions, risks or predispositions.
People have reason to be concerned. Employer-sponsored health insurance plans in the private sector cover more than half of all Americans. Numerous reports in the news media and from expert groups have already uncovered instances where people were denied health insurance or coverage for particular conditions based on genetic information. In one case, a young boy, who had inherited an altered gene from his mother making him susceptible to a potentially fatal heart condition, was denied coverage by a health insurer when the boy's father lost his job and group coverage, and then tried to buy new insurance.
In 1993, the Ethical, Legal and Social Implications (ELSI) Working Group of the Human Genome Project issued a report titled "Genetic Information and Health Insurance". The report recommended that people be eligible for health insurance no matter what is known about their past, present or future health status. Two years later, the ELSI Working Group and the National Action Plan on Breast Cancer (NAPBC) jointly developed guidelines to assist federal and state agencies in preventing genetic discrimination in health insurance.
Further, the ELSI Working Group and NAPBC recommended that health insurers be prohibited from using genetic information or an individual's request for genetic services to deny or limit health insurance coverage, establish differential rates or have access to an individual's genetic information without that individual's written authorization. Written authorization, the groups said, should be required for each separate disclosure and should specify the recipient of the disclosed information.
Next, the National Human Genome Research Institute (NHGRI) and the United States Department of Energy, acting through the ELSI Working Group, cosponsored a series of workshops in the mid-1990s on genetic discrimination in health insurance and the workplace. The findings and recommendations of the workshop participants were published in Science: [sciencemag.org] (Genetic Information and the Workplace: Legislative Approaches and Policy Challenges) magazine, the monthly journal of the American Association for the Advancement of Science.
What are the legislative protections?
Those recommendations, and earlier ones issued by the ELSI Working Group and NAPBC led, in part, to new legislation and policies at both the federal and state levels. The Health Insurance Portability and Accountability Act (HIPAA) of 1996 provided the first federal protections against genetic discrimination in health insurance. The act prohibited health insurers from excluding individuals from group coverage due to past or present medical problems, including genetic predisposition to certain diseases. It limited exclusions from group plans for preexisting conditions to 12 months and prohibited such exclusions for people who had been covered previously for that condition for 12 months or more. And the law specifically stated that genetic information in the absence of a current diagnosis of illness did not constitute a preexisting condition.
On the other hand, HIPAA did not prohibit health insurers from charging a higher rate to individuals based on their genetic makeup, prevent insurers from collecting genetic information or limit the disclosure of genetic information about individuals to insurers. Nor did it prevent insurers from requiring applicants to undergo genetic testing.
The next step in addressing the issue of genetic discrimination was taken by President Bill Clinton. The President had earlier supported proposed legislation that would have banned all health plans - group or individual - from denying coverage or raising premiums on the basis of genetic information. When the legislation failed to pass Congress, President Clinton issued an Executive Order in February 2000 prohibiting agencies of the federal government from obtaining genetic information about their employees or job applicants and from using genetic information in hiring and promotion decisions. In announcing the order, President Clinton said, "We must not allow advances in genetics to become the basis of discrimination against any individual or any group. We must never allow these discoveries to change the basic belief upon which our government, our society, and our system of ethics is founded - that all of us are created equal, entitled to equal treatment under the law."
Both before and since that Executive Order, a number of bills have been introduced into Congress to further deal with genetic discrimination in health insurance and employment. Nine bills were introduced in the 106th Congress (1999-2001) and four in the 107th Congress (2001-03). Meanwhile, 41 states have enacted legislation related to genetic discrimination in health insurance and 31 states have adopted laws regarding genetic discrimination in the workplace. The state laws regarding health insurance conform to HIPAA.
There continues to be a high degree of interest in these topics in state legislatures. More than one hundred bills were introduced in state legislatures in 2000 alone. Some would inaugurate protection from genetic discrimination while others would modify or clarify existing legislation.
Last Updated: June 2004
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