WASHINGTON _ The federal government, concerned that geneticadvances will outpace society's ability to adjust to newdevelopments, said Monday it has awarded $2.5 million in grants toresearchers studying the ethical conundrums rising out of genetictesting for cancer.Funded by a consortium of federal health institutions, including theNational Center for Human Genome Research, the grants willenable researchers to examine such thorny concerns as the impactof genetic counseling on women's' decisions to undergo DNAtesting and how adolescent girls react to having their mothers testedfor the breast cancer gene.The emphasis appears to be part of a broad reexamination of avariety of ethical concerns perplexing those who are conducting themost fundamental research in history on the make up andfunctioning of the human organism.Francis Collins, director of the genome research center, told theHuman Genome 1994 conference that doctors soon will be able tocarry out "broad genetic testing across the population, and in high-risk groups."Collins added that "a lot of questions remain to be answered" aboutethical underpinnings and social consequences of peering into one'smedical future.Most genetic ethicists agree, at present, that genetic testing shouldbe limited to tests that contribute to a patient's medical care. If notherapy is available, speakers said, testing should not be conducted.In an attempt to explore these issues:u Researchers at Fred Hutchinson Cancer Center in Seattle willprovide genetic counseling and DNA testing for the BRCA1mutation in women from families with a risk of breast cancer. Theywill examine the impact of alternative forms of counseling fromgenetics specialists and primary care providers on women'sdecision-making about DNA testing.u Researchers at Fox Chase Cancer Center in Philadelphia willsurvey teenage girls' understanding, knowledge and beliefs aboutbreast and ovarian cancer and study how the girls are affected bytheir mothers' testing for the BRCA1 cancer gene.u Researchers at Johns Hopkins University in Baltimore will try todetermine what drives a woman with a family history of cancer todecide to have genetic testing.u Researchers at Georgetown University, in Washington, will studymethods for educating and counseling women with a family historyof breast or ovarian cancer who seek DNA testing.Nancy Wexler, whose persistence in tracking down families inVenezuela with Huntington's disease helped speed research into thedefective gene, said patients have an absolute right "not to know" ifa defective gene, like the ones that linked to breast cancer orHuntington's disease will prematurely end their lives.But the gap between principles and practice already has begun towiden. Many voluntary organizations are having trouble enforcingtheir own guidelines set up in an effort to enforce ethical norms,Wexler said."One of our concerns, now that the test is commercially available,"Wexler said, "is that these guidelines are getting tossed out, bymedical services that do not provide pre-test counseling for theirpatients. In some instances, when voluntary organizations have refused toinclude these medical providers on their lists of recommendedservices, they have been threatened with lawsuits, she said. n
-- Steve Sternberg Special To BioWorld Today
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