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Read Making a Killing

home / healthcare / in the media

Ottowa Citizen
Jun 27, 2000

by Mike Blanchfield

'The language in which God created life': Breakthrough hailed as 'too awesome to comprehend'

WASHINGTON -- Awe-struck world leaders and scientists compared the completion of the map of the human genetic code to the first moon landing, but quickly warned yesterday that the scientific breakthrough must be tempered by strict legal and ethical guidelines.

''Today we are learning the language in which God created life,'' U.S. President Bill Clinton said. ''We are gaining ever more awe for the complexity, the beauty, the wonder of God's most divine and sacred gift.''

Calling it ''a day for the ages,'' Mr. Clinton announced that two teams of scientists completed a rough draft of the genome map, the blueprint for human beings, a breakthrough that could lead to cures for cancer and other diseases and greatly increase human lifespans. But Mr. Clinton issued a warning, echoed by other world leaders and the scientists who made the breakthrough, that the new discovery must be accompanied by new laws that would protect privacy and prevent discrimination against any group.

British Prime Minister Tony Blair said: ''For most of us, today's developments are too awesome to comprehend,.''

''There are enormous possibilities for him and his generation, but also some dangers. And our job is to try to develop the possibilities and thwart the dangers,'' he said. ''It gives us a chance to do so much for our people, but it will raise really difficult ethical and moral and legal questions,'' Mr. Blair said.

The excitement of the day produced poetic references to other historic milestones and evocations of works of literature that have sought to define the human spirit.

But it was tempered by a sober acknowledgment of the potential abuses of the discovery, as poll results indicated a high level of mistrust among Americans.

The worries range from fears of discrimination against the disabled and the genetically flawed, to worries about invasions of privacy if people's genetic data fall into the hands of corporations or governments.

Some question the morality of the research that led to the discovery and a fierce debate is raging about how much companies should be able to profit from it. Others wonder how humans will cope if their fate, instead of being unknown, can be read in their genes.

The breakthrough is the first step in what is expected to be a decades-long process that could change medicine. It is expected to lead to the production of new drugs that could eradicate diseases such as Alzheimer's, Parkinson's and diabetes, as well as cancer.

''Today we celebrate the revelation of the first draft of the human book of life,'' said Dr. Francis Collins, head of the National Human Genome Research Institute, which led the 10-year, publicly funded $300-million U.S. effort.

''We must provide the protections against potential misuses of genetic information,'' he added. ''I hope today's announcement is the necessary wake-up call.''

Celera Genomics Inc. of Rockville, Maryland has also been working for about two years to map the human genome.

Mr. Clinton brought both competing groups together yesterday, after they agreed to release their findings simultaneously, which had the spin-off effect of validating each other's research.

In a show of solidarity, the public and private groups appeared together at the White House and promised to jointly publish their findings later this year in scientific journals. The move followed weeks of negative news reports that cast their competition as a bitter ''race.''

Teams from the United States, Britain, France, Germany, Japan and China began the project 10 years ago.

One of the researchers, J. Craig Venter, left the consortium and founded his own company, Celera, with the express purpose of doing the same work, more quickly, for profit.

Celera sequenced the genomes of three women and two men, from people of Hispanic, Caucasian, Afro-American and Asian backgrounds.

The two projects each deciphered some 3.1 billion sub units of DNA, which contain at least 50,000 genes determining the traits of a human being.

Missing or damaged genes can cause disease. This new genetic map brings scientists closer to the root causes of disease than ever before.

If the data were printed on letter paper and stacked, it would tower as a high as the 180-metre Washington monument.

But the discovery also raises the possibility of abuse -- by employers, by insurance companies, and by private corporations bent on profit.

''(It) should not be owned by one individual or one company,'' said Dr. Michael Dexter, a British scientist who worked on the public project.

The remarks were clearly aimed at Mr. Venter, who has expressed interest in profiting from the discovery. Shares of Celera rose only $4.25 to $129.50 on the New York Stock Exchange in the hours following yesterday's announcement.

Mr. Venter defended the right of companies to patent discoveries. He said the U.S. Patent Commission has ''raised the bar'' on genome patents, requiring companies to show a specific diagnostic or therapeutic role, in effect blocking massive genome patents to ensure companies are ''not just doing it on economic speculation.''

But, Mr. Venter added, ''Patents are a very key part of the process of making sure new diagnostics and therapeutics are available to the American public.''

Mr. Venter said new laws protecting against genetic discrimination are critical ''in order to maximize the benefits from genome discoveries.''

Yesterday's historic announcement coincided with the release of a Time/CNN poll of 1,200 Americans that found 75 per cent did not want insurance companies to know their genetic code.

Critics fear if the breakthrough allows the likelihood of serious disease to be predicted, some people will be rendered uninsurable. Another 84 per cent didn't want the government to have the information.

Respondents were also split on the ethics of the research, with 41 per cent agreeing it was morally wrong and 47 per cent saying it was not.

About 65 per cent said they didn't believe companies should be allowed to profit from the research.

In California, a group called the Foundation for Taxpayer and Consumer Rights urged the strongest possible privacy protection laws, including ''an absolute seal on every DNA test'' and criminal sanctions for companies that buy and sell the information.

''The corporate bid to own and control information about the human genetic code is an omen of the next great struggle facing humanity,'' said the foundation.

''The mapping of the human genome opens a Pandora's box for the balance of power between corporations and humans.''

While acknowledging the ethical challenges that lay ahead, Mr. Clinton expressed wonder at the discovery.

The U.S. president recalled how in the same room where he was making the announcement, former president Thomas Jefferson and Meriwether Lewis first examined the map of the Lewis and Clark expedition, which opened up the American West.

''It was a map that defined the contours and forever expanded the frontiers of our continent and our imagination,'' he said.

''We are here to celebrate the completion of the first human genome. Without a doubt, this is the most important, most wondrous map ever produced by humankind.''

Mr. Venter, the entrepreneur, said he was inspired by his experiences as a Vietnam medic 33 years ago. ''When I witnessed firsthand that some men live through devastating trauma to their bodies while others died after giving up from seemingly small wounds,'' he recalled, ''I realized that the human spirit was at least as important as our physiology.''

Mr. Collins, the top government scientist, quoted the poet Alexander Pope: ''Know then thyself, presume not God to scan, the proper study of mankind is man.'' Of yesterday's announcement, he asked: ''What more powerful form of study of mankind could there be than to read our own instruction book?''

He said yesterday's events gave added meaning to the words of author Antoine de Saint-Exupery, who wrote in his book, The Little Prince: ''Your goal is not to foresee the future, it is to enable it.''

However, the breakthrough was a bittersweet experience for Mr. Collins. On Sunday, he attended his sister-in-law's funeral.

''She died much too soon of breast cancer,'' he said. ''The hope and promise of understanding all of the genes in the genome and applying this knowledge to the development of powerful new tools came just too late for her.''



GRAPHIC: P Black & White Photo: Jonathan Evans, Reuters / At the British half of yesterday's news conference, from left: Dr. John Sulston, director of Britain's Sanger Centre, Dr. Michael Morgan, chief executive of the Wellcome Trust Genome Campus and Dr. Michael Dexter, director of the trust. Dr. Sulston opposed the patenting of the genome information.; Black & White Photo: Win McNamee, Reuters / In the U.S., Dr. Francis Collins, right, director of the National Institute of Health, and Greg Schuler of the National Center for Biotechnology Information.

LANGUAGE: ENGLISH

LOAD-DATE: June 27, 2000

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