Advice to legislators looking at genetic maps: Take the road less traveled

By Lisa S. Dean
web posted July 24, 2000

Since the issue of personal privacy has become a "hot topic" among voters this election season, many have been bombarding their elected officials at both the state and federal levels to solve the problem. Politicians have found a convenient scapegoat by placing the blame for the loss of personal privacy on private businesses, after all, they collect your personal information and then turn around and sell it for a profit, leaving you, the consumer, vulnerable to identity theft and other privacy violations.

However, the problem of privacy erosion did not begin with businesses and corporations. It was the government, mostly at the federal level, requiring citizens to provide their personal information, initially, in order to receive government grants and services, including student loans and drivers licenses.

That soon expanded to include businesses that are regulated by or have a close association to government, such as financial institutions. Employers were required to collect and submit personal information on their employees to the federal government. Then physicians were required to submit medical records of their patients to the government. All of this information was compiled in to databases kept by federal agencies.

Those same federal agencies that promised to keep that information secret, broke their promise and actually sold it to private businesses, which compiled all the information into one nice, neat little database and sold it back to the federal government. As the government required more and more information to be provided to it by citizens, more information was turned over to the private sector. Businesses quickly realized that they were sitting on a mountain of gold and began to sell and share the private personal data that was given them to other businesses for a profit. Soon, even they began to require more personal information of their customers in exchange for goods and services. There were no laws being passed or enforced to protect our personal information and government authorities had already, through their own actions, given the green light to corporations to follow in their own footsteps.

The result has been that for that reason and knowing that background, privacy advocates have been less critical of the private sector than they have been of the government. In fact, there have been signs that indicate certain businesses are becoming more concerned about their customers privacy and have been taking steps to regulate themselves by securing the information they collect and even providing "opt-in" or "opt-out" provisions for their customers, giving them the choice of having their information sold or shared or not. However, there are other industries that have little or no regard for their customers' privacy and self-regulation is out of the question. The insurance companies are among them.

It is the insurance companies that want to expand medical databases that contain everything that we normally would discuss only with our doctors to include more information such as our genetic maps. For what purpose? Well, "risk assessment" of course. If you apply for health insurance, they want to make sure that you're "worth insuring." In other words, that you won't cost them any money by needing expensive treatments or therapy for diseases that are hereditary in your family. They can easily make those conclusions by looking at your DNA to see if cancer or heart disease are prevalent in your family history. If so, you are a high risk to that insurance company and may not get insurance coverage at all based on illnesses that you might have inherited.

Last week the Canadian newspaper The Ottawa Citizen reported that one of its nation's largest insurance companies intends to do just that. Responding to the announcement that the entire human genome has been mapped, the policy director at Royal and Sun Alliance Financial said, "If the information is there, we would like to be able to use it in our risk assessment. . . . If someone has had specific testing and knows they have a predisposition to a genetic problem, then obviously as an insurance company to properly select the risk, we would like to have the same information."

The Office of the Privacy Commissioner in Canada has expressed concern of the possible uses of this genetic information but in the U.S. where such testing is more widespread, the federal government has been doing very little to protect such information from being used to discriminate against those who have risky DNA sequences.

In typical fashion, the states are moving faster than the federal government and not a moment too soon. Some are preparing legislation that would prohibit such information from being collected and used to deny people insurance or other opportunities, such as employment. By doing so, they may actually shame the federal government into taking action, although historically speaking, we should be extremely cautious about the kind of action the federal government might take.

But whatever the case, action is needed now, lest we continue along the same well-worn path that has already been established by the federal government with regard to the rest of our private personal data that has been bought and shared 100 times over, at great cost to our liberties. So my advice to legislators at all levels, when you come to the two paths converging in the wood, this time try the one less traveled.

Lisa Dean is Vice President for Technology Policy at the Free Congress Foundation, and co-host of the television program "Endangered Liberties."

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