Genome map leader urges U.S. ban on genetic bias
By Lisa Richwine
WASHINGTON, July 11 (Reuters) - The man who led the private mapping of the human genome urged Congress on Wednesday to outlaw discrimination based on genes to help ease people's fears that their DNA could be used against them.
Craig Venter, president of Celera Genomics Corp. <CRA.N>, urged lawmakers to pass legislation to prohibit companies from denying insurance or other benefits to people simply because they have genes that may play a role in future diseases.
Venter said scientists were poised for medical breakthroughs using the genome map but warned that the public may be too frightened to benefit from them.
"We all need to work together to make sure that fear does not prohibit people from taking advantage of these new discoveries," Venter said a hearing before a House Energy and Commerce subcommittee.
Rockville, Maryland-based Celera and government scientists announced in June 2000 they had each completed rough drafts of the human genome, the DNA sequence that gives instructions for life. Researchers are using the information to learn how diseases develop, to develop specialized treatments or cures and to boost preventive care.
Having a gene linked to a disease usually does not guarantee that an illness will develop, Venter said, noting that environmental factors also contribute.
"There is a tendency to think of DNA as the perfect predictor of future health ... I do not believe the human condition can be seen as merely a manifest of DNA sequence information," Venter said.
Other witnesses said people had lost jobs or insurance because they had certain genes but no disease symptoms. Others simply forego genetic tests that could help them because they worry who will see the information. In one widely publicized case, a railroad company tried to test workers to see if they had a genetic predisposition to carpal tunnel syndrome.
Legislation pending in Congress would bar insurance companies or employers from denying coverage or a job to people based on genetic test results. Some state and federal laws already ban some types of discrimination, but some said those measures had loopholes and did not apply to everyone.
Health insurers said they thought new legislation was unnecessary and would only add new requirements to already complex federal rules for coverage.
"Although well-intentioned, these proposals would hurt the very people they're intended to help. For many people, premiums would rise," said Donald Young, interim president of the Health Insurance Association of America, which represents 300 firms.
Young said none of his group's members require applicants for coverage to undergo genetic testing and that no companies exclude coverage or increase rates based on DNA information. He said misinformation was leading to unjustified anxiety that insurers would abuse genetic data.
18:42 07-11-01 |
