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Human Genome News Archive Edition

Human Genome News, July 1992; 4(2)

NIH-DOE Joint ELSI Working Group Holds First Public Forum

ELSI Insurance Task Force, Grantee Workshop, Other Activities Highlighted

Public Forum

The NIH-DOE Joint Working Group on Ethical, Legal, and Social Issues (ELSI) in human genome research held its first public forum on April 21 in Iowa City, Iowa. University of Iowa faculty members provided background information on genetics and the health and health policy implications of the Human Genome Project.

Genetics professionals and representatives of the public presented testimony; speakers included members of families affected by genetic disorders, state genetics coordinators, clinical genetics services providers, and clergy. Working group members were impressed by the breadth and depth of the testimony and discussion on providing access to and delivering genetic services, the need to protect the privacy of genetic information, and the risk of discrimination on the basis of genotype. Many speakers stressed the importance of involving affected families in ELSI program activities.

Task Force on Genetics and Insurance

The ELSI Task Force on Genetics and Insurance met March 23-24 and again May 31-June 1. At the March meeting, a subgroup charged with addressing alleged cases of insurance discrimination presented a series of background papers. The task force discussed state insurance regulations with a California State Insurance Commissioner's staff member and with experts in employment discrimination law and self-insured corporate benefit plans.

At the May 31-June 1 meeting the Insurance Task Force identified areas for further consideration. A subcommittee was formed to investigate the flow of genetic test information to insurance companies. Another group will study the nature of adverse selection, which occurs when applicants know they will become ill from a genetic disorder but conceal the test results and purchase large amounts of health insurance at a low premium. Although industry-wide actuarial data has taken into account the incidence of genetic conditions in the population, insurance companies maintain that adverse selection causes higher-than-expected claims payments. The insurance industry cites adverse selection in reserving the right to examine the results of applicants' genetic tests.

The Insurance Task Force drafted an outline for its final report, slated for May 1993, which will address many of these concerns.

Subcommittee reports will be heard at the next task force meeting, to be held in conjunction with the American Society of Human Genetics conference in San Francisco, November 9-10.

ELSI Grantee Workshop

The first NIH and DOE ELSI grantee workshop will be held on September 14-16 at the Radisson Mark Plaza Hotel in Arlington, Virginia. Attendance by all grantees is strongly encouraged. (Contact for workshop: Elinor Langfelder; see below.)

NIH Cystic Fibrosis (CF) Studies Consortium

The NIH Cystic Fibrosis Studies Consortium, which was formed to foster cooperation among the eight CF investigative groups coordinated by NCHGR, met June 2-3. Discussions continued on informed consent, standardization of psychological measurement tools, and laboratory quality-control measures. The principal investigators of each of the eight cystic fibrosis testing and counseling studies reported on their progress in planning and developing educational materials and recruitment strategies. [See HGN 3(5), 1-2 (January 1992).]


Copies of the written testimony at the public forum are available on request from the National Center for Human Genome Research (NCHGR).


Contact:

  • Elinor J. Langfelder
    NIH NCHGR ELSI Branch
    Bldg. 38A, Rm. 617
    9000 Rockville Pike
    Bethesda, Md 20892
    301/402-0911 Fax: 301/480-2770

Reported by Elinor J. Langfelder
ELSI Branch, NCHGR

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Human Genome Program, U.S. Department of Energy, Human Genome News (v4n2).

Human Genome Project 1990–2003

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.

Human Genome News

Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.