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THE NATION'S FIRST PUBLIC SURVEY ON HUMAN GENETICS

 THE NATION'S FIRST PUBLIC SURVEY ON HUMAN GENETICS
 /ADVANCE/SOUTHFIELD, Mich., Sept. 28 /PRNewswire/ -- The nation's


first public opinion survey on human genetics has found that the vast majority of Americans support the use of gene therapy to treat disease and favor continuing genetic research. The poll also found, however, that the public knows little about gene therapy and genetic testing, and has some concerns about them.
 Gene therapy is an experimental procedure to treat disease by restoring or replacing a missing or faulty gene in an individual. The results do not affect future generations.
 In a survey of 1,000 adults, conducted for the March of Dimes by Louis Harris and Associates, 89 percent of Americans said they approve of using gene therapy to treat genetic diseases, 89 percent also favor continuing research into gene therapy.
 Over two-thirds of Americans (79 percent) say they would be "willing" to undergo gene therapy to correct a serious or fatal gene disease, including 30 percent who are "very willing" and 49 percent who are "somewhat willing." And 88 percent say that if their child has a usually fatal genetic disease, they would have the child undergo gene therapy, including 52 percent who are "very willing" and 36 percent who are "somewhat willing."
 CREATE A "CLIMATE OF TRUST"
 "The March of Dimes believes that gene therapy may soon become the most important and powerful weapon against birth defects and disease in human history," said Robin Gold, a genetic counselor at Sinai Hospital and March of Dimes volunteer. "We also believe, however, that its success depends largely on establishing a climate of trust in which American people have confidence in the potential for gene therapy to effect cures for disease, as well as in how gene therapy is practiced."
 "The fact that science has the ability to correct a basic human defect demands a great deal of public debate on social and ethical issues involved," Gold added. "We commissioned this survey to help stimulate that debate, as well as learn what Americans know about gene therapy."
 PEOPLE LACK BASIC KNOWLEDGE
 The March of Dimes survey found that, despite high levels of public support, relatively few Americans have even a basic knowledge of genetic testing or gene therapy. The survey found that over two-thirds (68 percent) know "relatively little" or "almost nothing" about genetic testing. Their exposure to gene therapy is even more limited: 87 percent say they know "relatively little" or "almost nothing" about it.
 "As with other rapidly changing technologies, advances in gene therapy seem to have outpaced the public's understanding of its possibilities," Gold said.
 "The survey findings clearly indicate that Americans support gene therapy technology, despite having some uncertainty about it," she added.
 The March of Dimes has used the survey findings to develop new public education materials about gene therapy and genetic testing that are being released today.
 THERAPEUTIC VS. EUGENIC USES OF GENE THERAPY
 While most of the people polled support the use of gene therapy to treat disease, sizable minorities of Americans say they approve of using gene therapy for eugenic or non-therapeutic purposes. Forty-three percent approve of using gene therapy to improve the physical characteristics that children would inherit; 42 percent approve of gene therapy to improve the intelligence level children would inherit.
 "The March of Dimes opposes the use of gene therapy for non- therapeutic purposes," said Dr. Michael Katz, vice president for research of the March of Dimes. "Applying gene therapy in any way other than as a cure for disease would be a misuse of its potential, and completely contrary to the reasons why it was developed," he added. "We believe its use must be restricted to the treatment or prevention of birth defects and other disease."
 Dr. Katz said the March of Dimes currently supports a significant amount of basic research on the mechanisms of gene action, and looks forward to supporting clinical applications of this research in the form of gene therapy that would restore the health of an individual. "We are not in the business of making healthy people 'better' or 'perfect,' Dr. Katz said. "We are in the business of making people with diseases healthy."
 STRICT REGULATION OF RESEARCH FAVORED
 When asked whether the potential danger from genetic alteration of cells is so great that strict regulations are necessary, nearly three-quarters of Americans (73 percent) agree, including 44 percent who strongly agree.
 Dr. Katz pointed out that gene therapy is currently an experimental procedure, and that trials of all such experimental procedures on humans in the United States are strictly regulated by the federal government and by institutional review boards.
 GENETIC TESTING
 According to the March of Dimes survey, almost eight out of 10 Americans (79 percent) say they would take genetic tests, before having children, to discover whether their future offspring would be likely to inherit a fatal genetic disease. Seventy-two percent say they would take genetic tests to determine whether they or the children they already have, were likely to have a serious or fatal genetic disease.
 Two-thirds of Americans (64 percent) say they would have a test during pregnancy (or during a wife's pregnancy) to determine whether the fetus had a genetic disease; one-third (32 percent) say they would not want such a test.
 By a margin of two to one, Americans believe genetic testing should be offered to everyone (65 percent) rather than limiting it to people who have a reason to think they might have a particular disease gene.
 WHO ELSE HAS THE RIGHT TO KNOW?
 Most Americans feel that information from genetic tests should not be completely confidential. Nearly six in 10 (57 percent) Americans say that if someone is a carrier of a defective gene or has a genetic disease, then someone else deserves to know. Virtually all of those who believe the information should not be completely confidential, say the affected person's spouse deserves to know (98 percent); 58 percent say the person's insurer deserves to know; 33 percent say an employer deserves to know.
 The survey was conducted by telephone between April 17 and April 30, 1992, among a randomly selected national cross-section of Americans, 18 years of age and older. The sampling error is plus or minus 3 percent.
 The March of Dimes is a national voluntary health agency whose mission is to improve the health of babies by preventing birth defects and infant mortality. Through its Campaign for Healthier Babies, the March of Dimes funds programs of research, community services, education and advocacy. The Foundation has been a leader in the funding of genetic research for over 30 years.
 -0- 9/29/92
 /NOTE: A video news release will be transmitted on Tuesday, Sept. 29, from 1-1:30 p.m. EDT on Telstar 301, Transponder 12V. The transmission repeat will be on Oct. 1 from 12:30-1 p.m. EDT on Telstar, Transponder 12V. Transmission is five minutes long and includes 2-minute VNR and B-roll and sound bites. Featured speakers are Dr. Jennifer Howse and Jessica Davis, M.D., co-director of the Human Genetics Division of Cornell University Medical Center. Graphics of survey results are a part of the VNR. Radio news producers can call 1-800-452-4994 for a phone feed. The audio news release has the same content as the video news release. CONTACT: Mary Ellen Gleeson or Susan Hall of the March of Dimes Southeast Michigan Chapter, 313-423-3200/ CO: March of Dimes, Southeast Michigan Chapter ST: Michigan IN: HEA MTC SU:


DH -- DE014 -- 3987 09/28/92 13:11 EDT
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