Capitol Hill faces possible struggle with genome technology

WASHINGTON (CNN) -- Technological breakthroughs such as Monday's announcement that scientists have nearly mapped the human genome have sparked privacy concerns among American voters -- an anxiety that has not gone unnoticed by lawmakers.

Polls show many Americans are nervous about how data culled from the human genome project will be used. Both President Clinton and British Prime Minister Tony Blair let researchers know Monday that their governments will be watching closely to ensure that the science leading to the breakthrough is used without abuses of privacy or profiteering.

"We must ensure that new genome science and its benefits will be directed toward making life better for all citizens of the world, not just a privileged few," Clinton said at a White House event.

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Cracking the human genome

Monday's announcement followed a decade of research by a multinational public consortium, including researchers from the United States and Britain, Germany, Japan and France, and the private U.S. company Celera Genomics.

Clinton and Blair urged in March that the research involved be made public, as allowing scientists unencumbered access to data could lead researchers to better understand human biology and fight disease.

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

Alongside hopes of miracle cures and individually tailored medicines raised by the mapping of the human genome lie fears that the most private of all information -- what makes each of us unique -- will be exposed and made available for public use.

President Clinton spoke Monday on the Human Genome Project.

In an attempt to assuage those fears, Clinton compared the breakthrough to Thomas Jefferson and Meriwether Lewis plotting out the Lewis and Clark expedition into the Louisiana Territory.

"Without a doubt, this is the most important, most wondrous map ever produced by humankind," Clinton said. But he added, "As we consider how to use new discoveries, we must not retreat from our oldest and most cherished human values."

News of the scientific breakthrough comes just days after the president issued an executive order barring discrimination based on genetic test results in federal personnel decisions. Additionally, the executive order set new, strict rules regulating federal use of the Internet technology, which can surreptitiously collect personal information via data collection software files commonly referred to as "cookies."

"Increasing knowledge of the human genome must never change the basic belief on which our ethics, our government, our society are founded. All of us are created equal, entitled to equal treatment under the law," Clinton said Monday in an effort to underscore the positive affects of cracking the genetic code.

University of Pennsylvania bioethicist Arthur Caplan said Monday that the privacy of information contained in the genome should be protected by national governments -- or even international law.

"When you get information about risk -- someone says you're likely to get colon cancer or likely to suffer from Alzheimer's disease, and that's going to happen at the doctor's office in say, three to five years -- that's something your boss, your insurance company could also use," he said. "And they might say, 'We don't want to hire you if you're going to have high medical costs, we don't want to give you life insurance.'"

"We really have to get that moving now. Otherwise we can have this information disempower us," Caplan added.

The public appears wary of the bright futures promised by the genetic advance. A recent CNN/Time Magazine poll found 46 percent of those questioned thought the work would have harmful results, while only 40 percent thought it would be beneficial.

More than 40 percent of those polled said they thought the project was "morally wrong," while 65 percent of the respondents said companies should not be allowed to patent human genome research.

Only 27 percent of the survey said companies should be allowed patents, and 47 percent said they did not consider the project morally wrong.

Caplan urged politicians to find some way to guarantee access to health care -- otherwise, many of the poor or uninsured would be left out of the benefits held out by genetic research.

"I don't think we can't put up with having a system with uninsured people, underinsured people, and just the rich getting all the bounty of this. After all, it was paid for by taxpayer money," he said.

Blair said governments can work together both to aid research into the benefits of the discovery and to minimize the risks involved.

"There are different legal systems, different social mores," Blair said. "But 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."

Monday, June 26, 2000

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• Ray hires new lawyers to wrap up Whitewater probe
  
• Clinton offers Republicans a deal on $1.9 trillion budget surplus
  
• Poll: Bush holds steady lead over Gore
  
• Capitol Hill faces possible struggle with genome technology
  
• Chelsea Clinton joins her mother on campaign trail; Lazio attacks gas prices
  
• latimes.com: The role of government comes into play in debate over Social Security
  
• Supreme Court rejects 'blanket primary' rules
  
• As GOP reaches out to immigrants, some find it a stretch
  
• Supreme Court reaffirms that police must warn criminal suspects of Miranda rights
  
• Activist groups plan 'shadow' conventions
  
• Clinton says federal gas tax repeal would come at price
  
• National Trust lists 'most endangered' historic sites in U.S.
  
• Elian's Miami relatives to petition Supreme Court to hear case
  

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