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Genetic Discrimination Law Desperately Needed, Says NHGRI s Collins

WASHINGTON, March 12 - The fevered pace of genomics-driven diagnostic research has made it imperative to create a comprehensive law barring genetic discrimination, Francis Collins said in a speech here on Tuesday evening.


Calling discrimination protections "a pillar" at the foundation of advances born out of the Human Genome Project, the National Human Genome Research Institute director said that national legislation that specifically barrs the use of genetic information for hiring, firing, or in setting the terms or price of health insurance is key to ensuring consumers' faith in genomics.


He also laid out a broad sketch of the ethical dilemmas facing a society on the brink of understanding the genetic code and its variations, and possibly how to manipulate them.


"Action is most desperately needed now" on a genetic anti-discrimination law, Collins told an audience at Georgetown University.


Collins is not the only genome superego to shine a light on the unique ethical challenges facing the post-genomic landscape. Craig Venter, the erstwhile Celera head and one-time Collins adversary, has shown significant interest in ensuring patients' and employees' rights. Venter, who has said in numerous recent speeches of his own that the US government must draft anti-genetic-discrimination legislation, is believed to be putting the final touches on a non-profit agency that deals with that very issue.


So far, though, a years-long effort to establish national genetic-discrimination standards has so far stalled in Congress despite support from both parties and a statement in June from President George W. Bush endorsing safeguards. But despite their support of the broader issue, lawmakers here remain mired in the details of proposed restrictions concerning the use of genetic information: Many Republicans are pushing for exceptions for use by researchers and law enforcement while many Democrats favor more comprehensive rules.


Meanwhile, consumers who choose to undergo predictive genetic testing remain exposed to the potential risk of higher insurance premiums or job-related repercussions. And although two Senate bills proposing restrictions on the information were introduced last week, progress remains slow largely because, according to Collins, a sufficient number of citizens have not yet been hurt.


"We should not have to wait for this crisis," he said. "This is really a matter, it seems to me, of civil rights."


Collins has long prioritized open public debate over the ethics of genomics research, and genetic discrimination is just one of his themes. NHGRI funding helped spur research into the ethical, legal, and social implications of genomics--known at the agency as ELSI issues--at the same time it bankrolled the actual genome-sequencing efforts of the Human Genome Project.


Collins usually prefers to spur public discourse about ethics and genomics by painting the issue with intentionally broad strokes. He speaks on sweeping, watershed topics like universal access, the desire for genetic perfection, and the definition of race.


But pressed on key ethical issues for the genomics industry, he expressed specific concerns about how industry might react when targeted genomics inevitably begins reducing the market size of blockbuster drugs. Will companies "be obligated to disclose if their drug only works for some?" he told GenomeWeb following his talk.

The institute regularly sponsors public fora on ELSI issues ranging from access barriers to potentially expensive new genomics-based drugs to how the society should battle the natural human temptation to use genetic manipulation to produce tailored offspring.


Collins, an openly devout Christian, has never been afraid to wonder aloud if the research he helped to define could spawn a growing "genetic determinism" that undermines the faith he holds dear.


His vision includes a world in which the genome's predictive power is viewed as so absolute that individuals stop striving, both spiritually and personally.


"This could undervalue the need for the spirit and our need for God," he said.

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