Part III--Genetic Fortune-Telling The Price For Knowing The Future Mike Field ------------------------ Staff Writer Whose Right to Know? ----------------------------------------------------------------- The women were strangers to one another, yet over the course of three hours they sat together and shared their deepest feelings, thoughts and fears about breast cancer. They met in conference rooms and meeting spaces at Greenspring Station and on the East Baltimore campus. Some came from families untouched by the disease; others had watched a mother, sister or some other close relative battle the illness, sometimes unsuccessfully. Assembled in groups of 10 with a court stenographer to capture every word spoken, they discussed the causes, effects and consequences of the third most common cause of death among women. All agreed that further research and a greater understanding were needed in combating the disease; most held out hope that someday, a cure or prevention would be found. It is perhaps not surprising then, that the group responded enthusiastically when informed that a new genetic test had been developed that could identify some women at risk for the disease. Yet in their initial excitement, few participants stopped to wonder how the test--which might only be useful to help predict, not prevent, the disease--would affect their health insurance. "We asked them what they thought about such a test, and overwhelmingly we found that the subjects didn't mention the insurance dimension," said Barbara Bernhardt, assistant professor of pediatrics at the School of Medicine and one of the primary investigators who led the discussions. Bernhardt and her collaborators hope to use the results of the focus groups to develop an informed consent process for genetic testing for breast cancer risk. "A big concern is that patients and consumers and doctors are not aware of the potential for insurance discrimination," Bernhardt said. "We feel the possibility is very real. Insurers have been quite candid in saying they will use this information if it is made available to them." Tests that identify increased risk for breast cancer--or any other devastating illness--could theoretically lead to higher premiums or outright cancellation of policies. Bernhardt suggests that they could also adversely affect a woman's ability to purchase life insurance. Science Ahead of Ethics ----------------------------------------------------------------- On the first floor of the 2024 East Monument building on the East Baltimore campus, an array of computers at the Genome Data Base keeps track of the worldwide effort to map the human genome. One day, the data base will contain the precise location of each of the estimated 80,000 to 100,000 human genes. Another computer, located at the National Institutes of Health in Bethesda, is tracking the simultaneous effort to sequence the base pairs (The Gazette, 11/27/95) of each of those genes. If the scientists of the Human Genome Project are successful--and there is no reason to believe they will not be--by the year 2005 researchers and physicians should have a base reference of human genetic structure that will enable them to easily identify individuals at risk for a variety of diseases, including many cancers. But while the science is advancing at a lightning pace--DNA structure was deciphered just 42 years ago--the social, legal and ethical implications of genetic research remain largely unresolved. For instance, questions of genetic privacy are particularly acute in the United States, where the national system of competitive private health insurance encourages insurers to minimize risk by screening out applicants who are already sick. "We have all grown accustomed to insurance questionnaires that ask, 'Have you ever had this, that or the other illness,'" Bernhardt said. "Although it has not happened yet, it is entirely possible--some would say likely--that insurance questionnaires will someday ask about or require genetic testing as well. Even now, if you submit a bill for genetic testing to your insurance company they are privy to that information; if you don't submit the bill, the test results become part of your medical record nonetheless." If insurers have the ability and the right to screen out applicants with a previous medical history of an illness, why should they be prevented from eliminating participants whose genes indicate they stand a statistically significant chance of coming down with that same illness sometime in the future? And what of the possibility that certain genes or gene combinations predispose individuals to behavioral patterns such as obesity or alcoholism? Should insurance companies be allowed to write conditional policies that forbid, for instance, potential alcoholics to drink? Risks to Research ----------------------------------------------------------------- An article in the October 1995 issue of Science argues that immediate reforms are necessary on a national level to prevent not only widespread genetic discrimination in insurance and even employment, but also in order to assure the availability of participants in future studies. "The use of genetic information to exclude high-risk people from health care by denying coverage or charging prohibitive rates will limit or nullify the anticipated benefits of genetic research," note the authors in their introduction. "People may be unwilling to participate in research and to share information about their genetic status with their health providers or family members because of concern about misuse of information." The study goes on to cite a recent survey of people with a known genetic condition in the family. Almost a quarter of the respondents indicated they had been denied health insurance coverage because of their genetic status, regardless of whether they were sick or not. "There is very little in the way of published documentation of insurance discrimination, and so far, not much has been quantified," said Nancy Kass, assistant professor of health policy and management in the School of Public Health. Kass, who teaches in the Program in Law, Ethics and Health, has recently initiated a three-year study of experiences, beliefs and attitudes surrounding privacy concerns and health insurance issues for the National Center for Human Genome Research. "Most of the information available at this time is anecdotal," Kass said. It does, however, indicate several areas in which increased genetic knowledge may adversely affect at-risk populations. There is the issue of insurance denial and premium rates, "but there are also issues such as job and lifestyle choices that we will be looking at," she said. "It is funny that in this country people have begun to make career choices based on health insurance options. If you think about it, it makes no sense to link where you choose to live or what job you choose to do with what insurance is available. The two have nothing to do with one another, but in this country, due to the employer-based health insurance system that arose in the 1920s, the two are linked." In order to end present and prevent future genetic discrimination, the Science magazine article recommends four reforms to the current healthcare system: prohibiting insurance providers from using genetic information in offering coverage; preventing them from setting rates based on the same information; prohibiting insurers from collecting or requesting genetic information at all; and preventing any holders of genetic information from releasing the information without specific written consent. The recommendations--meant for state and federal policymakers--are the work of a joint effort of the National Institutes of Health Department of Energy Working Group on Ethical, Legal, and Social Implications of the Human Genome Project and the National Action Plan on Breast Cancer. The article notes that since the launch of the Human Genome Project in 1990, eight states (including Maryland) have enacted some form of protection against genetic discrimination in health insurance. Several others are currently considering similar legislation. Yet two factors greatly limit the effectiveness of such legislation: nearly all the current laws focus only on genetic testing, leaving insurance companies free to discriminate on other genetic information such as family history. More significantly, state laws do not cover the estimated one-third of the insured population covered through self-funded plans, which are federally regulated. Hopkins, for instance, self-funds its Blue Cross/Blue Shield plan, which means the university could deny coverage to certain employees based on genetic testing if it chose to do so.(It currently does not and has no plans to do so, according to senior director of Benefits Administration Frank Kellner.) Insurers argue they should be able to use genetic tests for the same reason they are able to exclude pre-existing conditions: that in a market where insurance remains voluntary they must have some means of protecting themselves from "adverse selection" in which individuals only purchase insurance when they know they are sick or are going to become sick. "The way the system is currently structured if I were an insurance company I would want to have the ability to genetically test too," Kass said. "If health insurance was mandatory or we had national insurance, this would create a different set of assumptions." At this time, insurance discrimination by mandatory genetic testing is more of a theoretical than practical issue, notes Kass. The current understanding of the relation between a faulty gene and disease is still embryonic, and with only a few exceptions there is little in the way of statistical evidence relating the two. For the time being, this absence limits the ability of insurers to incorporate genetic risks into their actuarial calculations. "Are any insurance companies actually conducting genetic testing to deny coverage? There have been a lot of surveys done with insurance companies and right now the answer is no," Kass said. "But there is evidence that if genetic information becomes reliably available to them they will use it." Impetus to Reform ----------------------------------------------------------------- Ironically, some have suggested that the coming ability to test genetically for a variety of illnesses and susceptibilities may bring about what years of debate and the efforts of several U.S. presidents have been unable to achieve--significant reform to the current system of American health care. "There are two factors relating to genetic testing that are somewhat unique," Kass said. "First, unlike, say, AIDS or lung cancer, there is the definite feeling that a genetic disease or predisposition to disease is no one's fault. The second impetus is the widespread belief that when you add all the various gene tests up, eventually just about everybody is going to be at risk for something." A bill sponsored by Sen. Nancy Kassebaum (R-Kansas) that would prohibit insurers from denying coverage based on genetic testing is now before Congress. Critics contend, however, that the bill would be only marginally effective as it allows insurers to set rates based on genetic information. Individuals at high risk might find insurance available, but priced beyond their means. If anything, genetic testing only brings the disadvantages of the current system of American health insurance into sharper focus. "This is all part of a larger issue," Kass said. "Ought having a medical condition generally--regardless of any genetic component--limit an individual's chance to get medical insurance? Is it fair that people who are sick in our society can be denied insurance? Should such a system exist?" These are questions that have perplexed and bedeviled national politics for years, periodically emerging to draw attention to the 40 million or so Americans who have no health insurance whatsoever. Now, with the impending arrival of sophisticated means of genetic testing for everything from arthritis to sickle cell anemia, they are bound to take on new urgency. The argument over the healthcare reform, temporarily in remission, will undoubtedly flare again. Next time, the brave new world of genetic prognostication will no doubt play a central part in the debate.
Go to Gazette Homepage