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World: Is The Human Gene Map A Tool For Good Or Evil?




Scientists working for private- and publicly-funded research organizations have virtually completed their map of the human genetic code, or genome. At a ceremonial announcement Monday at the White House, U.S. President Bill Clinton and British Prime Minister Tony Blair -- speaking by satellite -- had high praise for the achievement. But they also urged vigilance against sinister applications of this research. RFE/RL Senior Correspondent Andrew F. Tully reports.

Washington, 27 June 2000 (RFE/RL) -- Everyone seems to agree that the nearly completed map of the human genetic code will be a great benefit for medicine. But there is also fear that unscrupulous governments and private companies can use this information to hurt people.

For the past decade, several governments and private industry have spent billions of dollars to decipher human genetic code -- or "genome" -- which is the biological definition of ourselves.

On Monday, scientists in America and Britain essentially completed their work. And the political leaders from both countries were quick to praise their efforts.

U.S. President Bill Clinton and British Prime Minister Tony Blair -- appearing at the White House by satellite -- spoke to jointly announce the achievement. Joining them were two of the leaders of the project.

And all agreed that the work is of unprecedented importance. The genome carries all genetic information for every living thing. Therefore, to understand the human genome is to understand not only a person's past -- his heredity -- but also his future -- how he will age and to which diseases he is susceptible.

Clinton and Blair did not merely provide the venue for the announcement. Both men have been personally involved in mediating the sometimes heated rivalry between the private and public projects to map the human genome.

Some private researchers had hoped to be able to patent or copyright their maps of the human genome. But leaders of the publicly funded effort opposed that option. Three months ago, Clinton and Blair backed the publicly funded researchers. At the same time, they stressed that patents be permitted for methods to use that genetic information -- for example, in curing a disease by genetic means.

Present at Monday's White House announcement were Francis Collins, head of America's publicly-funded Human Genome Project, and Craig Venter, the president of Celera Genomics, a private research company. The two men made no mention of their past rivalry. And Clinton glossed over it. Instead, he focused on how the achievement could affect the future of medicine.

"There is much hard work yet to be done, and that is why I'm so pleased to announce that from this moment forward, the robust and healthy competition that has led us to this day and that always is essential to the progress of science will be coupled with enhanced public-private cooperation."

Much of the White House ceremony was devoted to the sheer magnitude of the scientists' achievement. Clinton likened it to Galileo's invention of the telescope to explore space. Blair said it was medically more important than even the development of antibiotics. Collins likened the genome map to a user's manual to the human body. Yet in introducing this utilitarian description, he could not resist citing the words of the 18th century English poet Alexander Pope.

"Science is a voyage of exploration into the unknown. We are here today to celebrate a milestone along a truly unprecedented voyage; this one, into ourselves. Alexander Pope wrote, 'Know then thyself. Presume not God to scan. The proper study of Mankind is Man.' What more powerful form of study of mankind could there be than to read our own instruction book?"

Blair, Clinton, Collins, and Venter agreed that this "instruction book" could lead to great advances in finding genes that either cause diseases or make an individual susceptible to them. Then, researchers could develop therapies that treat these disorders at their very source. And Venter addressed one of the leading goals of medical science:

"As a consequence of the genome efforts that you have heard described by Dr. Collins and myself this morning, and the research that will be catalyzed by this information, there is at least the potential to reduce the number of cancer deaths to zero during our lifetimes."

Venter also said his company's research should reinforce the idea of the brotherhood of mankind and the human race's place in nature. He noted that the genome map drawn up by his company, Celera Genomics, was derived from the genes of three women and two men -- all of different races.

"When life is reduced to its very essence, we find that we have many genes in common with every species on earth and that we are not so different from one another."

But such research can lead to sinister applications. For example, public opinion polls show that many people fear that government and private industry can use their genetic information against them. Blair expressed their fears.

"As with the greatest scientific achievements, the ethical and the moral questions raised by this astonishing breakthrough are profound. 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."

Clinton added -- more specifically -- that the information will not be used to invade privacy, to discriminate or to stigmatize any individual.

But the leaders of Britain and the U.S. cannot speak for all governments -- or for all private companies. And so Clinton and Blair probably cannot quiet the fear that yet another corner of personal privacy is now vulnerable.



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