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Human Genome News Archive Edition

Human Genome News, May 1992; 4(1)

Task Force on Genetics and Insurance

The Task Force on Genetics and Insurance of the NIH-DOE Joint Working Group on Ethical, Legal, and Social Issues held an information-seeking meeting in Washington, D.C., on December 2 and 3, 1991. The task force is charged with studying how the increased ability to predict future illness will affect insurance access and practices. The first year is being spent in gathering information; the second year the task force will look for solutions.

The meeting had two principal goals: (1) to learn more about the insurance industry's use of genetic information and (2) to examine clinical, scientific, and technological advances that might affect the availability of genetic information.

Speaking on behalf of the insurance industry were Warren Schreier (Benefit Trust Life), Harvie Raymond, John Cova, and Jude Payne (Health Insurance Association of America), and Sandy Lowden (Crown Life Insurance Company). Reed Pyeritz (Johns Hopkins University School of Medicine), Katherine Klinger (Integrated Genetics, Inc.), and Philip Reilly (Shriver Center for Mental Retardation) spoke, respectively, on the clinical, technological, and scientific advances that are likely to shape the future role of genetic information in insurance. These speakers and the ensuing discussions brought out the following points.

According to the speakers, insurers are not currently doing genetic testing to determine policy eligibility or rates. They do consider genetic data gathered through other means, such as from an individual's file that includes a family history or other information on the risk of illness or early death. Insurers argue that they do not want to decrease their business by excluding large numbers of people from coverage; some conditions that cause substantial morbidity and mortality have genetic contributions but are not commonly thought of as genetic.

Factors are presently not favorable to the use of genetic testing by insurance companies, but participants expect these factors to change. Testing costs will decline, possibly sharply; predictive value of the tests may increase; competition may intensify as some companies perceive a competitive advantage in using genetic predictors; and the cost-benefit ratio of genetic testing will become more appealing. Automation of genetic tests will lower personnel costs considerably, and single-cycle panels of tests will decrease the per-unit cost. Basic research on the pathophysiology of genetic diseases may allow the use of cheaper test systems that do not rely on analyzing the DNA itself. Also, the technology for generating genetic information is developing very rapidly. Ten years ago, direct DNA testing was virtually impossible; today, the polymerase chain reaction makes testing a common practice.

Insurers cited underwriters' lack of sophistication about genetics as the reason for insurance being denied for genetic reasons even when little chance existed for morbidity or mortality increase. Improved understanding among underwriters could reduce the number of baseless rejections of people unlikely to fall ill or die prematurely, but individuals who carry detectable genetic risks could still be rejected or charged higher premiums according to the definition of fairness used by the insurance industry.

Experts at the meeting estimated that over 50% of U.S. companies, particularly larger ones, are self-insured-the largest and fastest-growing method of providing health insurance. This trend toward self-insurance complicates public policy regarding genetic information and insurance; the federal government leaves insurance regulation mostly to the states, but the federal Employment Retirement Income Security Act (ERISA) gives states very little regulatory authority over self-insurance plans. The effect is to create a public policy vacuum in the regulation of health-care benefit plans provided by self-insured companies.

The task force established two subcommittees. One, chaired by Paul Billings (Pacific Presbyterian Medical Center), will examine allegations that insurers engage in genetic discrimination. The second, chaired by David Tannenbaum (Blue Cross/Blue Shield Association), will explore questions about the role that genetic information is likely to play with and without individual underwriting. The task force expects to complete its final report with recommendations in May 1993.

The full report of the task force meeting is available from Elinor Langfelder.


Task Force Contact:

  • Elinor Langfelder
    NIH NCHGR
    Ethical, Legal, and Social Implications Program
    Bldg. 38A, Rm. 617
    9000 Rockville Pike
    Bethesda, MD 20892
    301/480-0911
    Fax: 301/480-2770

Reported by Thomas H. Murray, Case Western Reserve University

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Human Genome Project 1990–2003

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