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Human Genome News Archive Edition

Human Genome News, May 1990; 2(1)

Joint Ethics Working Group Hosts Workshop

Nine Specialists Participate in First ELSI Workshop
The Joint Working Group on the Ethical, Legal, and Social Issues (ELSI) Related to Mapping and Sequencing the Human Genome held its first workshop on February 5-6, 1990, at Williamsburg, Virginia. See Related articles NIH-DOE Joint Working Group on ELSI Established and Juengst To Head NCHGR Ethics Program. Chaired by Nancy S. Wexler of the Hereditary Disease Foundation and Columbia University, the ELSI working group hosted nine specialists in the fields of sociology, history, ethics, genetic counseling, law, labor, insurance, and journalism. The invited specialists are listed below.

The meeting opened with a general discussion of the following issues:

  • Education: how to facilitate informed public discussion on the issues arising from potential applications of genome research data.
  • History: how to use an awareness of past abuses of genetics to avoid such pitfalls in the future.
  • Privacy: how to protect the confidentiality of genetic information.
  • Medical insurance: how to assess the effect of genetic predisposition information on a person's ability to obtain affordable insurance from a private carrier.
  • Clinical services: how to determine the impact that detailed genetic information will have on the practice of medicine.
  • Commercialization of genome technologies: how to transfer technology from research laboratories to the private sector.

Participants Develop Priority Areas

After consideration and discussion of these topics, workshop participants developed the four priority areas that are highlighted below.

Cystic Fibrosis Experience

The recent identification of the gene responsible for cystic fibrosis has paved the way for development and commercialization of methods to determine a person's carrier status and to identify affected fetuses. Tracking and examining in detail the cystic fibrosis experience promises to provide an instructive model of issues relevant to the Human Genome Project. These issues include:

  • transfer of technology from research laboratories to private industry for development and marketing;
  • accuracy and quality control of test kits;
  • impact of genetic test information on genetic counseling options;
  • role of insurance companies in covering medical costs of affected patients identified by prenatal tests;
  • liability of clinicians who fail to perform genetic testing;
  • confidentiality of information obtained from genetic testing; and
  • psychological impact of medical prognoses on patients and family members.

Insurance Coverage

The use of genetic tests by private insurance companies to predict future health problems and thereby to determine an applicant's insurability has become an important issue. Increased availability of genetic test information may identify new, large groups of people who are predisposed to common ailments such as heart disease, cancers, diabetes mellitus, and immune disorders. The concern is how private insurers will use this information to calculate the financial risk of insuring individuals who carry these genes. Studies are needed to identify how and which genetic information would be used to determine a certain group's insurance risk and to define its insurability.

Currently, insurance premium reductions are given for health-promoting behavior such as exercising, limiting alcohol intake, and not smoking. The workshop participants questioned whether insurers would give similar rewards to people who carry tumor-suppressor genes, toxin-resistance genes, or genetically hearty immune systems.

While most private insurers do not use genetic tests to determine whom they will insure, insurance companies do feel they should have access to such information if their policy holders do. Because private insurance companies operate as for-profit businesses and may withhold coverage from individuals who carry disease genes, the working group suggested that alternative systems of health insurance for these people need to be researched.

Education, Outreach

Clinicians, journalists, and other workshop participants who frequently deal with the general public observed that the public at large seems either to be uninformed or to hold strong misconceptions about medical genetics and the role of genes in biology, disease, and behavior. After the public's understanding is assessed, education and outreach programs need to be developed so that informed debate and discussion about the social implications of the Human Genome Project can take place.

Workshop participants also felt that, in addition to underscoring science and medical benefits likely to stem from genome project research, education should demystify genetics and genome science. Special precautions should be taken to point out that determining the complete sequence of human DNA will not necessarily produce immediate cures or knowledge of how gene functions determine human characteristics. Also, the opportunity to examine genetic material of large numbers of people is likely to force a redefinition of the concepts of "normal," "health," and "disease"; value-neutral language should be adopted when referring to the wide variations in human genetic composition.

The ability to use an individual's genetic makeup to make biological predictions may intensify the notion of "genetic determinism"-- the idea that genes alone direct a person's biological and, possibly, social fate. Education should emphasize the roles that environment and many other factors play in an individual's social, behavioral, and physical development.

Organizations and institutions already in place for disseminating information must be identified. They may include the mass media and school systems, health volunteer associations, organizations for medical and allied health professionals, labor groups, policy makers, and religious groups. Also, the needs of people most likely to be affected by the availability of genetic information should be addressed by open dialogue between the ELSI working group and members of genetic disease and disability support groups.

Confidentiality Guidelines

As genetic testing technology becomes more widely available, access to genetic information by the individual, family, employers, insurance companies, and other institutions will increasingly affect personal privacy and the dissemination of medical information. Workshop participants identified three current levels of confidentiality in medical information: patient, medical institution, and government.

In addition, computerized databases now exist for storing "confidential" medical information. The participants felt that guidelines establishing responsible use of such information should address consent to be tested, the patient's right to know or not to know test results, how information is used by physicians to make decisions about medical care, and how information may be used by a patient's family.

To implement the working group's recommendations, NCHGR and DOE may fund projects initiated by the research community or may invite applications from other groups with appropriate expertise. Some possibilities considered are workshops, task forces, commissioned papers, reports, and contracts.


Invited Specialists Attending the Ethics Workshop

February 5-6, 1990, Williamsburg, Virginia

  • Clinical Medicine: Elena Gates, Obstetrics & Gynecology, University of California Medical Center
  • Ethics: Adrienne Asch, Social Sciences and Policy, New Jersey Bioethics Commission
  • Journalism: Thomas Goldstein, School of Journalism, University of California at Berkeley
  • Law: Steven P. Goldberg, Georgetown University Law Center
  • Insurance: Robert J. Pokorski, Lincoln National Life Insurance
  • Sociology: Dorothy Nelkin, Department of Sociology, School of Law, New York University
  • Eugenics: Robert Proctor, The New School for Social Research
  • Labor: Robert Nussbaum, Department of Human Genetics, University of Pennsylvania School of Medicine; and Sheldon W. Samuels, Workplace Health Fund, AFL-CIO

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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.

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