Human Genome News, November 1991; 3(4)

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Human Genome News Archive Edition

Congress Hears Testimony on ELSI Issues

The House Committee on Government Operations, in keeping with its decade-long interest in protecting the privacy of medical information, held the second in a series of hearings on October 17 to address the question of privacy of genetic information emerging from the Human Genome Project. Committee members cited insurance problems and forensic uses of genetic data, as well as the potential for redefining the doctor-patient relationship, the risk of creating a genetic underclass, and the use of genetic information in marketing strategies. Two four-member panels of distinguished witnesses testified before the committee.

Panel 1

On the first panel James Watson (Director, NIH National Center for Human Genome Research) briefly described the science of the Human Genome Project. Bernadine Healy (Director, NIH), noted that the NIH mission is to improve human health through research. She pointed out that the power of the new science has great potential for good; the discovery of genes can lead to prevention, treatment, and cure of many genetic illnesses. "I believe future historians will point to the last decades of the 20th century as the time when America helped the life sciences come of age," she said.

Healy stated that NIH is committed to studying the social consequences of the genome program and announced the formation of a new Center for Science Policy Studies within the NIH Director's office to integrate studies of ethical, legal, and social issues (ELSI) with other NIH research.

David Galas (Associate Director, DOE Office of Health and Environmental Research) noted the close cooperation of DOE and NIH in the Human Genome Project and predicted a shift from patient treatment to illness prevention. He said many ELSI considerations are not novel; they have existed for a long time, but the genome project provides urgent motivation for addressing them anew.

Galas described the separate but cooperative nature of the NIH and DOE ELSI programs. Both are coordinated by the Joint ELSI Working Group (appointed by the DOE-NIH Joint Subcommittee on the Human Genome), with DOE emphasizing science education. The Human Genome Project raises questions for study, he said, including the kind of health care system needed, balancing of privacy rights with public rights, the state of current privacy protection, and the possible usefulness of other countries' experiences in this area.

Watson and Galas both stressed the importance of allowing time for the Joint ELSI Working Group and its Privacy and Insurance task forces to discuss these issues and submit their findings to the joint subcommittee before legislative action is taken. "About 1 to 2 years will be needed," Watson predicted.

W. French Anderson (NIH Heart, Lung, and Blood Institute), a pioneer in gene therapy, advocated privacy and confidentiality of genetic information. He also stressed that the predictive power of genetic knowledge is incomplete; most traits are multigenic and are expressed differently in individuals, depending on environmental influences.

Panel 2

Nancy Wexler (Hereditary Disease Foundation and Columbia University), Joint ELSI Working Group Chair, began the second panel by sharing her experience of having a 50% chance of carrying the gene for Huntington's disease. She described the fear of stigmatization, stressing that genetic privacy must be protected. One problem is the time lapse between presymptomatic test availability and the ability to provide treatment or cure. Wexler concluded on a positive note, describing the genome project as a great source of hope for affected people and their families.

Paul Billings (Pacific Presbyterian Medical Center, San Francisco) discussed the history of genetic abuses in the United States and the potential role of genetics in modern society. Genetics and eugenics played a significant part in social policymaking in the early 20th century and led to sterilization of the mentally impaired, criminals, and others deemed genetically unfit. Marked improvement in genetic technologies since World War II has sparked a resurgence of genetics applications. In this country, entire families, including adopted children not genetically related to the family, are losing insurance because of genetic test results. Billings concluded by warning that many potential benefits of the Human Genome Project would be lessened by lack of privacy protection.

Jeremy Rifkin (Foundation on Economic Trends) testified that Congress had requested a coordinated social study of genetic research 14 years ago. He called the current ELSI program a good beginning but was dismayed at the prospect of waiting another 1 to 2 years for results. He stressed the need for legislation to ensure that a eugenics movement could not gain momentum.

Philip Reilly (Eunice Kennedy Shriver Center for the Mentally Retarded) testified on behalf of the American Society of Human Genetics and as a private citizen with an academic interest in genetic databases and DNA banks. According to Reilly, state-based mandatory screening programs have helped in the treatment of metabolic disorders and other diseases, but such genetic information may be misused without proper protection. Also, health care providers are in a quandary when a patient tests positive for a genetic disease; unauthorized disclosure of genetic information is a violation of the physician-patient relationship, yet the doctor has an interest in warning family members at risk. Reilly recommended (1) devising and implementing guidelines for the use and collection of genetic data, (2) limiting access to genetic information by insurers and employers, (3) mandating strict research protocols, (4) treating violations of confidentiality regulations as a criminal act with potential for civil remedies, and (5) undertaking innovative efforts to educate relevant parties. Reilly noted the especially sensitive question of testing children.

Three common points emerged from the remarks of the eight panelists:

  • genetic information has been misused in the past,
  • current laws and regulations may be inadequate to protect people from discrimination in the present, and
  • work must be done to ensure that genetic information is protected in the future.

These important issues are being addressed by the NIH-DOE Joint ELSI Working Group and its task force on privacy.


Reported by Elinor Langfelder, NIH NCHGR
and Daniel W. Drell, DOE

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