Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, July 1993; 5(2)
In May 1991 the Joint NIH-DOE Working Group on the Ethical, Legal, and Social Implications (ELSI) of Human Genome Research formed the Task Force on Genetic Information and Insurance to develop recommendations to prevent the negative impact of genetic information on access to insurance. The group was composed of physicians, biologists, geneticists and genetic counselors, lawyers, ethicists, and representatives from the insurance industry, associations of people with disabilities, and an organization of state governments. After meeting periodically for 2 years, the task force, cochaired by Thomas Murray (Case Western Reserve University) and Jonathan Beckwith (Harvard Medical School), presented its report to the working group on May 10 of this year. Following is a synopsis of the report's executive summary and the full text of the recommendations.
One of the ironies in the current crisis in health care coverage is that developing more-accurate biomedical data could make things worse rather than better for those most in need. Knowledge useful in predicting the individual's likelihood of developing a particular disease opens the door to both the welcome preventive strategies and the unwelcome possibility of genetic discrimination. Injecting considerations about genetic risks into the current health care system could result in more-refined risk rating by insurers and greater difficulty in finding affordable health care coverage for large numbers of people. Access to health care might be denied or "preexisting" conditions excluded from coverage. Individuals might be compelled to provide genetic information as a condition of obtaining health care coverage, and information on genetic health risks may also include children, parents, siblings, and other relatives.
Affording special protection for genetic material and data is unlikely to provide a solution to these challenges. Genetic privacy should be vigorously protected, but other varieties of health-related information are equally sensitive. Because diseases are increasingly seen as having both genetic and nongenetic components, classifying health-related data as wholly genetic or nongenetic is difficult. Furthermore, as a practical matter, genetic and other materials are not segregated in medical records. The standard personal medical history, for example, is a rich source of genetic information. Policies intended to protect genetic privacy will need to address the privacy of health-related knowledge in general. The task force considered these factors carefully in making its recommendations.
In anticipation of fundamental reform in the financing and delivery of health care in the United States, the Task Force on Genetic Information and Insurance offers the following recommendations. The recommendations concern health care coverage and should not be applied uncritically to other forms of insurance, such as life or disability income insurance.
*We use the phrase "program of basic health services" to describe the array of services that would be available to all after implementation of major health policy reforms, such as those being considered by the President's Health Policy Task Force. We explicitly reject all connotations of "basic" as minimal, stingy, or limited to such services as immunization and well-child care. A program of "basic" health services could encompass a broad range of care for those most in need.
Copies of the full report are available from:
Bldg. 38A, Room 617
9000 Rockville Pike
Bethesda, MD 20892
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v5n2).
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.