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Groups seek human gene-transfer delay.

Groups seek human gene-transfer delay

The long and winding road toward genetic engineering in humans took a new twist this week, as leaders from disability groups--citing fears of "a new form of eugenics" -- sought to delay the first U.S. gene-transfer experiments in humans.

On Jan. 19, National Institutes of Health (NIH) Director James B. Wyngaarden gave final approval for the injection of gene-altered cells into humans. The procedure, designed to improve an experimental cancer treatment (SN: 10/8/88, p.228), is not in itself a therapy. But researchers regard it as a forerunner of experiments aimed at curing individuals with inherited defects by altering their genetic makeup.

Under the direction of Steven A. Rosenberg of the National Cancer Institute, researchers in the past two weeks have begun removing samples of cancer-fighting cells from terminally ill cancer patients. Rosenberg and NIH co-workers W. French Anderson and R. Michael Blaese plan to genetically alter those cells and reinject them into the patients within six weeks, he says.

But a lawsuit filed in the U.S. District Court for the District of Columbia this week by a Washington, D.C.-based public-interest group seeks to prevent those experiments, pending a more complete review of the procedure's social and ethical implications. Foundation on Economic Trends President Jeremy Rifkin announced his suit during a meeting of the NIH's Recombinant DNA Advisory Committee, which advises the NIH on matters relating to genetic engineering. Rifkin attended the meeting with leaders of advocacy groups for the disabled -- including Evan Kamp, commissioner of the U.S. Equal Employment Opportunity Commission, and Martin Gerry, who was assistant secretary for civil rights at the Department of Health, Education and Welfare under Gerald Ford and a member of the Reagan administration's Disability Advisory Council.

"We have a long history of the scientific establishment trying to separate out the research and development of a technology from its social application," Rifkin told the committee. "We want a complete halt on future gene-therapy experiments until an advisory board on eugenics is established that will fully assess each proposed experiment."

Eugenics refers to the manipulation of genes through restricted breeding or other techniques to improve a race or species. A major eugenics movement within the U.S. scientific community around the turn of the century resulted in laws that restricted immigration, marriage and procreation among individuals deemed genetically unfit.

Although the courts had overturned most such legislation by the 1970s, some civil- and disability-rights leaders express concern that new genetic technologies may spur a eugenics revival.

"I think there's an [incorrect] assumption among scientists and medical people that everyone agrees on what constitutes a benefit to an individual," says Deborah Kaplan of the Berkeley, Calif.-based World Institute on Disability. "I'm concerned that as technology and as different cures become available there will be immense pressure on myself and my peers to undergo different forms of treatment. I'm concerned about social pressure, family pressure, pressure from the medical community and real pressure from the insurance industry" to submit to genetic treatments.
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Author:Weiss, Rick
Publication:Science News
Date:Feb 4, 1989
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