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Human Genome News Archive Edition

Human Genome News, September 1992; 4(3)

Task Force on Genetics and Insurance Sets New Focus on Principles and Policy Options

The Task Force on Genetics and Insurance of the NIH-DOE Joint Working Group on Ethical, Legal, and Social Issues met May 31-June 1 in Chevy Chase, Maryland. The meeting marked the 1-year anniversary of the task force and served as a transition from its first-year goal of gathering information to its second-year focus on principles and policy options.

Areas for Further Investigation

Task force members identified three remaining gaps in their factual knowledge and took steps to fill them.

  • Adverse selection. A subcommittee chaired by Ray Mosely (University of Florida) was formed to investigate the issue. [See HGN 4(2), 3 (July 1992).]
  • Management of genetic information. A subcommittee chaired by Betsy Anderson (Federation for Children with Special Needs) was formed to look into medical record ownership, whether research records are kept with regular medical records, and potential abuses of information in the records. It will also examine how genetic information is handled by researchers, clinicians, registries, and the insurance industry, as well as legal rights of access to the data.
  • Self-insured employers [see HGN 4(1), 6-7 (May 1992)].

Significance of Genetic Information

As a transition step from fact gathering to principle development, the task force worked to define problems presented by genetic information in the areas of underwriting, reimbursement, and records management. Members examined the consequences of genetic knowledge that distinguish it from other types of information, including family stigma, psychological and emotional import, the authoritarian shadow of eugenics, reproductive impact, and prognostic uncertainty. The group also discussed the improving quality of genetic information, its potential application to increased numbers of people, and the lack of clear clinical protocols for its use. Discussion also focused on potential over-interpretation and misinterpretation by the insurance industry and the public.

Defining the Scope

To clarify discussions, future reports, and recommendations, task force members agreed on definitions for certain key terms. Genetic information was defined as "alterations of the genome that one is born with or that one acquires." This definition includes alterations discovered by the five methods presented at the meeting by members Anderson, Jonathan Beckwith (Harvard Medical School), and Rob Bier (American Council of Life Insurance): molecular genetic techniques; examination of chromosomes by microscopy; chemical, immunochemical, or biochemical; medical or physical examination; and family history.

Principles and Report

The task force established a subcommittee to define principles and circulate them to the full group in September. Members also drafted an outline for the final report to be completed in May 1993.


Jane Loewenson
NIH NCHGR

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Human Genome Project 1990–2003

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