- Genetics and Just Health Care:A Genome Task Force Report
The Human Genome Project is expected to increase dramatically our ability to predict the likelihood of genetic disease in an individual. It is important to reject the myth of genetic determinism—i.e., the simple-minded belief that such complex outcomes as heart disease, cancer, or autoimmune diseases are caused exclusively by particular genes. But it is equally important to acknowledge that genes may play a role in making a person more or less susceptible to such diseases. The ever-increasing prospect of genetic prediction, spurred by the Human Genome Project, has implications for social practices such as insurance, in which predicting the risk of disease or death plays a crucial role. Concerned that improved genetic prediction might have unfortunate social consequences unless the impact of such predictions were anticipated, the U.S. Human Genome Project's Working Group on Ethical, Legal, and Social Issues established a Task Force on Genetic Information and Insurance in May 1991. The author of this article was appointed Chair of the Task Force, and an eminent scientist and member of the ELSI Working Group, Jonathan Beckwith, was named Co-Chair.
The Task Force membership was chosen to represent a variety of organizations with substantial interests in genetics and insurance. Representing those at risk of genetic discrimination were individuals from The Alliance for Genetic Support Groups, the Federation for Children with Special Needs, and the Tourette Syndrome Association. Representing insurers were individuals from the Blue Cross Blue Shield Association, the largest group of not-for-profit health insurers, representing 71 member plans; the Health Insurance Association of America (HIAA), representing approximately 300 commercial health insurance companies; and the American Council of Life Insurance (ACLI). The Task Force membership also included scholars in the fields of law, public policy, medical genetics, and bioethics.
The Task Force's mandate included identifying the primary policy issues raised by the impact of increased genetic information on access to health care financing and life and disability insurance and developing policy options for addressing those issues. It was instructed to report its findings in May 1993 in a document accessible to policy makers, insurance companies, self-insured corporations, insurance applicants, and other interested parties (Task Force 1993).
The Task Force met seven times over its two-year life. By the end of the first year, it had reached several tentative conclusions. Most importantly, we became convinced that the problem posed by increased genetic prediction in insurance was a genuine and important one. When we began, the danger seemed plausible but far from certain. The information we gathered in the first year persuaded us that genetic prediction of disease was in one sense already with us and, in another sense, likely to grow massively in the foreseeable future.
A crucial conceptual distinction also arose in the first year. Insurance representatives insisted upon distinguishing between "fair" and "unfair" genetic discrimination. Their view, more or less, was: insurers have a right, possibly even an obligation, to avoid what the industry terms "adverse selection"—i.e., selling a policy to someone likely to experience claims in excess of premiums. For example, health insurers do not wish to sell policies, at least at standard rates, to persons infected with HIV. Such persons can be expected to make extensive claims for reimbursement of treatment expenses. Insurers describe denying policies to such persons and other practices, such as charging very high premiums or selling policies that exclude coverage for HIV treatment, as "fair" discrimination. "Fair" discrimination for genetic disease might include similar policies for persons with symptomatic sickle-cell disease or other genetic diseases resulting in substantially increased health care costs. "Unfair" discrimination, in contrast, would discriminate against people with genetic conditions that do not result in increased health care costs.
All members of the Task Force agreed that so-called "unfair" discrimination was undesirable and should be eliminated. But it soon became clear to the Task Force that what insurers regarded as "fair" discrimination also had the unfortunate result that many people who needed health care experienced great difficulty in getting it financed. The concept of "fair" genetic discrimination implied that it was...