Genetic Information and Insurance Task Force Report

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


Genetic Information and Health Insurance Report of the Task Force
on Genetic Information and Insurance

NIH-DOE Working Group on Ethical, Legal and Social Implications of Human Genome Research

May 10, 1993
Executive Summary
Task Force Recommendations
Task Force Members

Executive Summary

One of the ironies in the current health care coverage crisis is that developing more accurate biomedical information could make things worse rather than better.

In the current American health care system, information 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 obtain 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.

Biomedical science and the delivery of health care are being reshaped by advances in our understanding of human genetics. New insights into health and disease, new diagnostic and prognostic tests and the possibility of new therapies reflect significant investments by the public and by private business and are no longer limited to the uncommon disorders traditionally labeled as "genetic diseases." Among the first products of genetic research is information useful in predicting the likelihood that an individual will develop particular diseases, opening the door both to preventive strategies that we would welcome, such as changes in diet and exercise patterns, and to the unwelcome possibility of genetic discrimination.

Injecting information about genetic risks into the current health care system could result in ever more refined risk rating by insurers and ever greater difficulty in finding affordable health care coverage for large numbers of people. At a minimum, people could be discouraged from obtaining genetic information that might be useful in disease prevention and early treatment or for care planning and management because that same information could jeopardize their access to health care coverage in general, or to treatment for a condition excluded from coverage because it was "preexisting." Under other circumstances people might be compelled to provide genetic information as a condition of obtaining affordable health care coverage. Genetic risk information carries an additional, wider burden because information about an individual's genetic health risks may also be information about the risks of children, parents, brothers, sisters and other relatives.

One suggested approach--providing special protection for genetic information--is unlikely to succeed. This special protection has been suggested because of the relevance of genetic information to family members and its implications for reproductive choices, potential discrimination and stigmatization. Genetic privacy ought to be vigorously protected; however, other varieties of health related information are equally sensitive. Furthermore, as a practical matter, genetic information is not segregated from other health related information in, for example, medical records.

Special protection for genetic information is also difficult to enforce because of the "genetic revolution" in medicine. Diseases increasingly are coming to be seen as having both genetic and non-genetic components making it ever more difficult to classify health related information as wholly genetic or non-genetic. 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 information in general. If we want strict standards to safeguard genetic information, then those same standards will have to extend to all health related information. The Task Force considered these factors carefully.

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Task Force 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 anyone.

  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 Research Program
NHGRI
Bldg. 38A, Room 617
9000 Rockville Pike
Bethesda, MD 20892
Phone: (301) 402-4997

Insurance Task Force Members

Betsy Anderson
The Alliance of Genetic Support Groups, and
The Federation for Children with Special Needs

Jonathan Beckwith, M.D.
Department of Microbiology and
Molecular Genetics
Harvard Medical School

Rob Bier
American Council of Life Insurance

Paul Billings, M.D.
Chief, Medical Genetics
California Pacific Medical Center

R. Steven Brown
Council of State Governments

Alexander Morgan Capron, LLD
Pacific Center for Health Policy and Ethics
University of Southern California

Bartha Knoppers, LLD
University of Montreal

Sue Levi-Pearl
Tourette Syndrome Association

Ray Moseley, Ph.D.
Department of Community Health
and Family Medicine
University of Florida

Thomas Murray, Ph.D.
Center for Biomedical Ethics
Case Western University

Jude Payne
Health Insurance Association of America
(former)

Harvie Raymond
Health Insurance Association of America

Philip Reilly, M.D., J.D.
Shriver Center for Mental Retardation

Deborah Stone, Ph.D.
Pokross Professor of Law and Social Policy
Brandeis University

David Tennenbaum
Technology Management Division
Blue Cross/Blue Shield Assoc.

Consultants

Bill Allen, JD
Department of Community Health
and Family Medicine
University of Florida

Sandy Lowden, M.D.
Crown Life Insurance

ELSI Working Group Chair

Nancy Wexler, Ph.D.
Hereditary Disease Foundation and
Department of Neurology and Psychiatry
College of Physicians and Surgeons
Columbia University

Human Genome Project Staff

Dan Drell, Ph.D.
Office of Health and Environmental Research
Department of Energy

Eric Juengst, Ph.D.
Acting Chief, Ethical, Legal, and Social Implications Branch
National Center for Human Genome Research
National Institutes of Health

Elinor Langfelder
Program Analyst, Ethical, Legal, and Social Implications Branch
National Center for Human Genome Research
National Institutes of Health

Elizabeth Thomson, RN, MS
Coordinator, Genetic Services Research
Ethical, Legal, and Social Implications Branch
National Center for Human Genome Research
National Institutes of Health

Michael Yesley, J.D.
Los Alamos National Laboratories
Department of Energy

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Last Updated: October 1, 2012