By Lisa Seachrist
WASHINGTON — Calling it the only way to realize the promise of the "whirlwind bio-revolution," Vice President Al Gore urged Congress to pass legislation that would ban employers from discriminating against employees based on the genes that they carry.
Speaking at a meeting of the Genome Action Coalition Tuesday, Gore proposed legislation that would prohibit employers from requesting or requiring genetic information for hiring or promotions. In addition, Gore's proposal would prohibit the disclosure of genetic information without the explicit permission of the individual. The move follows President Bill Clinton's proposed legislation that would ban genetic discrimination in health care coverage.
"We must hold tightly to our deepest and oldest values and make them one with our newest science," Gore said. "We cannot let our newest discoveries serve as the newest excuse to unleash the vulnerability to discrimination that has plagued us throughout human history."
Gore commented on the pace of genetic discoveries over the past two decades, highlighting how, in the 1980s, scientists spent nine years isolating the gene that causes cystic fibrosis, while, in the 1990s, the gene for Parkinson's disease was mapped in nine days.
"Not long from now, that will seem like an eternity," Gore said. "Just over the horizon lies a future where we will know the locations and makeup of every human gene."
Gore pointed to silicon gene chip technology that will allow doctors one day to quickly analyze an individual's predisposition to any number of diseases. That day is unlikely to be realized if federal protections aren't put into place, he noted.
"Today already the fear of genetic discrimination is prompting Americans to avoid those genetic tests that could literally save their lives," Gore said. "According to one study, 63 percent of Americans say they would not take a genetic test if their health insurers or employers could get access to the results. Many women have already put off getting genetic tests for breast cancer because of a fear of discrimination."
Gore didn't offer specific details to his proposal, but it is likely that legislation will be introduced when Congress comes back into session on Jan. 27.
Carl Feldbaum, president of the Biotechnology Industry Organization (BIO), told BioWorld Today that the BIO board of directors has already, in principle, endorsed the vice president's view.
"We are pleased that the vice president is seeking to address the issue," Feldbaum said. "The board of directors has held that essentially genetic testing should be used as an advanced warning system for disease, not for stigmatizing people."
Feldbaum noted that BIO supports the plan to put in place federal legislation that would preempt state laws because "these are clearly national issues."
However, BIO does not support the concept of genetic information as separate from medical information, arguing that the results of many standard tests could result in discrimination in the workplace, in insurability and in education.
"We see genetic information as part of the continuum of medical information and support legislation that would protect against using any of the information to discriminate," Feldbaum said. "We don't want to see either genetic information or people stigmatized." *