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From: Human Genome News, July 1993; 5(2):1
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.
Synopsis of Executive Summary
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 con-sidered
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.
- 1. Information about past, present, or future
health status, including genetic information, should not
be used to deny health care coverage or service to
- 2. The U.S. health care system should ensure
universal access to and participation by all in a program
of basic health services* that
encompasses a continuum of service appropriate for the
healthy to the seriously ill.
- 3. The program of basic health services should
treat genetic services comparably to nongenetic services
and should encompass appropriate genetic counseling,
testing, and treatment within a program of primary,
preventive, and specialty health care services for
individuals and families with genetic disorders and those
at risk of genetic disease.
- 4. The cost of health care coverage borne by
individuals and families for the program of basic health
services should not be affected by information, including
genetic information, about an individual's past, present,
or future health status.
- 5. Participation in and access to the program of
basic health services should not depend on employment.
- 6. Participation in and access to the program of
basic health services should not be conditioned on
disclosure by individuals and families of information,
including genetic information, about past, present, or
future health status.
- 7. Until participation in a program of basic
health services is universal, alternative means of
reducing the risk of genetic discrimination should be
developed. As one step, health insurers should consider a
moratorium on the use of genetic tests in underwriting.
In addition, insurers could undertake vigorous
educational efforts within the industry to improve the
understanding of genetic information.
*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:
- ELSI Branch
- Bldg. 38A, Room 617
- 9000 Rockville Pike
- Bethesda, MD 20892
- Fax: -1950