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Clinton, Blair and scientists announce full genome sequencing

By MARK KUKIS

WASHINGTON, June 26 -- Leading genetic researchers joined President Clinton Monday to announce completion of a working draft of the sequence of the human genome, the genetic blueprint for a human being, a scientific breakthrough likely to reshape the study of biology and medicine forever.

"Without a doubt this is the most important, most wondrous map ever produced by humankind," Clinton said at White House ceremony with Dr. Craig Venter, president and chief scientific officer of Celera Genomics Corp., Dr. Francis Collins of the Human Genome Project, and, via satellite, British Prime Minister Tony Blair.

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"With this profound new knowledge, humankind is on the verge of gaining immense new power to heal," Clinton said. "Genome science will have a real impact on all our lives and even more on the lives of our children. It will revolutionize the diagnosis, prevention, and treatment of most, if not all, human diseases.

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Collins and Venter's appearance at the White House with Clinton represented the culmination of decades of genome research to discover the chemical makeup of human DNA in hopes of isolating the human genes associated with diseases like cancer, Alzheimer's, diabetes and Parkinson's. Celera and the international Human Genome Project, a joint venture publicly funded by the United States and the United Kingdom, had been racing against each other to break the genetic code in an intense scientific rivalry. But the two organizations have agreed to publish their findings together later this year and participate jointly in a sequence analysis conference, Clinton said.

"Together, they will examine what scientific insights have been gleaned from both efforts, and how we can most judiciously proceed," Clinton said.

Blair, Clinton, Venter and Collins warned of the ethical, moral and legal implications posed by unveiling the genetic map, however.

"With the power of this discovery comes, of course, the responsibility to use it wisely," Blair said. "We, all of us, share a duty to ensure that the common property of the human genome is used freely for the common good of the whole human race, to ensure that the powerful information now at our disposal is used to transform medicine, not abused, to make man his own creator, or invade individual privacy."

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Lawyers and ethicists have raised privacy concerns about the disclosure of one's genetic traits to employers of insurance companies. For example, an insurance company could be inclined to refuse coverage for a person genetically predisposed to develop cancer. Or an employer could use genetic information to discriminate against potential hires who are likely to miss work days do to genetically identifiable ailments.

Another concern revolves around the availability of newly discovered genetic data in the scientific community. Celera's privately funded research outpaced the efforts of the Humane Genome Project. And, unlike the U.S.-U.K. government project, Celera is not obligated to offer its findings freely. Some feared that Celera would map the genome first and legally withhold the information.

But recent legal precedents and Celera's own moves to disclose its findings have helped diffuse such worries. And under law, raw genetic data, however discovered, cannot be patented. The findings announced by Celera and the Human Genome project at the White House relate to raw genetic code, the sequencing of chemical compounds that makeup human DNA. Venter called for further laws to deal with the complex issues surrounding the rapidly expanding industry.

"New laws to protect us from genetic discrimination are critical in order to maximize the medical benefits from genome discoveries," Venter said.

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Clinton and Blair called for an international effort to address such concerns.

"I think that it would be a very good thing if the U.S., the U.K. and anybody else that wants to work with us could have the same sort of joint endeavor we've had with the human genome to deal with the implications of this, to deal with the legal, the social, the ethical implications," Clinton said.

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