Their hands on your genes

March 7, 1997

The demotion of a member of the US navy after he refused to give a sample of his DNA to the authorities has sparked fears among civil libertarians that Big Brother is doing something ominous with the genetic material that is being amassed. Julia Hinde reports.

Don Power was an American hero. A nuclear power machinist with the navy, he twice served his country in the Middle East during the gulf war. Paid more than many of his contemporaries, Power was up for promotion. That, he says, was until he refused to give a sample of his genetic material to his superiors. Now his naval career is in tatters.

No longer the naval hero, Power has found new prominence as an eloquent voice for the American Civil Liberties Union. He may have lost his home, his career and his life, but he still stands by his beliefs.

All United States military personnel are currently obliged to give blood samples from which their DNA is extracted. So are prisoners in more than half of US states. Many insurance companies and medical providers ask for genetic profiles, as do colleges and even some private schools. A vast bank of up to two million genetic profiles has already been collected. The US Department of Defense says the genetic samples given by military personnel are needed for identification purposes in case of death in service, but American academics fear that the motives are more sinister.

They warn that America needs to be on her guard against a rising tide of testing mania, a tide which is threatening to sweep away the population's civil liberties. They ask what is all this information about people going to be used for? To catch criminals? To improve the profits of insurance companies? To discriminate against genetically faulty individuals? And they say that Britain, with its much weaker traditions of individual liberty and regard for the rights of citizens, is at even greater risk.

Already anyone convicted of an offence in Britain can legally have a DNA profile taken and stored on a database. A leading British scientist, who asked not to be named, warned this week: "More intensive and extensive profiles are being taken in the UK than in any other country in the world."

Addressing the annual meeting of the American Association for the Advancement of Science in Seattle last month, academics repeatedly warned of the threat posed by biological and technological advances. They described a culture of testing whittling away at a nation's expectations of rights.

Philip Bereano, a professor in technology and public policy at the University of Washington and a board member of the Council for Responsible Genetics, says that genetic testing is just as dangerous as any previous attempt to restrict people's rights. Bereano quoted a speech made by President Bill Clinton during a recent visit to a Pennsylvania college campus: "The Human Genome Project at the National Institutes of Health, supported in universities all across America, will one day, in the not too distant future, enable every set of parents who has a little baby to get a map of the genetic structure of their child. So if their child has a predisposition to a certain kind of illness or a certain kind of problem or even heart disease or a stroke in its early forties, then they will be able to plan that child's life and upbringing to minimise the possibilities of that child developing that illness or that predisposition."

It is an optimistic picture, but not for Bereano: "We are used to traditional threats. But in the name of rationality and efficiency all kinds of programmes are being proposed, some of which are posing questions for the civil libertarian and the ordinary American. This is being propagated as efficient and rational, not as authoritarian.

"In our society today we are experiencing a testing mania or hysteria which is being expressed via power relationships. We are being told that if we can gather more information, if we can store it and use it, we can better track what is going on. People with power are making decisions about testing programmes and applying them to people with less power."

He added: "I think the chief threat we need to understand is that if restrictions to freedom are presented, they won't be by people in brown shirts roaming the streets, but by men in brown suits who stand up very politely in front of audiences and advocate schemes which are rational and efficient, but which may well result in a curtailment of our civil liberties."

Nadine Strossen, president of the ACLU and professor of constitutional law at New York City Law School, believes the American drive to collect more and more information about an individual is driven by a mix of big business and the fear of crime. Asked why the Americans appeared so keen to establish genetic profile banks, she said: "It's for cost containment purposes for insurance companies. Labour costs are going up. If they could get an idea if a person was going to get ill they could lower their costs. The lobby of insurance companies is so big." She added: "The public as a whole used to be very outraged about things that are now becoming common place. What is happening is a downgrading of our expectations about privacy."

Paul Billings, clinical associate professor of internal medicine at Stanford University, agrees: "There is a belief that you can catch criminals, particularly those who commit multiple crimes, and maybe even prevent crime, by collecting this data. There is increasing fear about uncontrolled behaviour in our society and a belief that genetic advances will allow better tracking and more control."

But how often does an embezzler leave DNA samples in the cash drawer or a murderer kill twice? asked Bereano. "Most people just bump off the person who is bugging them and then are done with it," he said. "There is an irrationality behind all this."

Billings argues that the Department of Defense's collection of DNA is uninformed and involuntary. "The stated goal is to improve the identification of those individuals killed in battle," he says, but then why are civilian members of the forces also obliged to contribute to the bank? "Genetic technology as it stands can result in genetic discrimination," he says. "It's not a potential. It's an actuality, particularly in the insurance markets, employment, adoption. In sectors of society where discrimination has historically taken place, genetic information may be used as another element of discrimination."

He says that Americans are already beginning to adapt their thinking to the consequence of genetic tests - sometimes unconsciously. A team at Stanford University questioned 200 people who claimed they had not been discriminated against, yet had been involved in the genetic enterprise. "We found enormous adaptation by those individuals to a world which they expected to discriminate against them," he said. "Because of the expectation of genetic discrimination, they avoided having a medical diagnosis or changing jobs."

And it's emerging as a worldwide problem, almost by default. Bereano warns: "This is not some peculiar US thing."

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