GENETIC INFORMATION AND HEALTH-INSURANCE

ONE OF THE IRONIES in the current health care coverage crisis is that developing more accurate biomedical information could make things wors e rather than better. In the current American health care system, info rmation about an individual's risk of disease plays a crucial role for many people in determining access to health care coverage. This link between the likelihood of needing health care and the ability to obtai n coverage for that care has the unfortunate result that those most in need may have the greatest difficulty finding affordable health care coverage. New advances in human genetics are transforming medicine by making available increasing amounts of such information about risk. Bi omedical science and the delivery of health care are being reshaped by advances in our understanding of human genetics. New insights into he alth and disease, new diagnostic and prognostic tests and the possibil ity of new therapies reflect significant investments by the public and by private business and are no longer limited to the uncommon disorde rs traditionally labeled as ''genetic diseases.'' Among the first prod ucts of genetic research is information useful in predicting the-likel ihood that an individual will develop particular diseases, opening the door both to preventive strategies that we would welcome, such as cha nges in diet and exercise patterns, and to the unwelcome possibility o f genetic discrimination. Injecting information about genetic risks in to the current health care system could result in ever more refined ri sk rating by insurers and ever greater difficulty in finding affordabl e health care coverage for large numbers of people. At a minimum, peop le could be discouraged from obtaining genetic information that might be useful in disease prevention and early treatment or for case planni ng and management because that same information could jeopardize their access to health care coverage in general, or to treatment for a cond ition excluded from coverage because it was ''pre-existing.'' Under ot her circumstances people might be compelled to provide genetic informa tion as a condition of obtaining affordable health care coverage. Gene tic risk information carries an additional, wider burden because infor mation about an individual's genetic health risks may also be informat ion about the risks of children, parents, brothers, sisters, and other relatives. One suggested approach-providing special protection for ge netic information-is unlikely to succeed. This special protection has been suggested because of the relevance of genetic information to fami ly members and its implications for reproductive choices, potential di scrimination and stigmatization. Genetic privacy ought to be vigorousl y protected, however, other varieties of health related information ar e equally sensitive. Furthermore, as a practical matter genetic inform ation is not segregated from other health related information in, for example, medical records. Special protection for genetic information i s also difficult to enforce because of the ''genetic revolution'' in m edicine. Diseases increasingly are coming to be seen as having both ge netic and non-genetic components, making it ever more difficult to cla ssify health related information as wholly genetic or non-genetic. The standard personal medical history, for example, is a rich source of g enetic information. Policies intended to protect genetic privacy will need to address the privacy of health related information in general. If we want strict standards to safeguard genetic information, then tho se same standards will have to extend to all health related informatio n. The Task Force considered these factors carefully.