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Jewish World Review July 1, 2001 / 7 Tamuz, 5761

Joseph Perkins

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Consumer Reports

Keeping health and money matters private -- DR. FRANCIS COLLINS and J. Craig Venter, the two scientists who led rival public-and private-sector efforts to crack the human genetic code, made a joint appearance in San Diego this week. They had a message for lawmakers in Washington: Enact legislation protecting genetic privacy.

Collins, director of the government-sponsored National Human Genome Research Institute, and Venter, founder of the Rockville, Md. firm Celera Genomics are wary that their breakthrough will lead to "genetic discrimination." Newly developed gene tests can identify patients predisposed to certain diseases for purposes of treatment but also can be used by employers or insurers to deny jobs or health coverage.

Indeed, earlier this year, the Burlington Northern Santa Fe Railway Co. was ordered by the Equal Employment Opportunity Commission to end its policy of requiring unionized workers to provide blood samples when they claim discomfort from carpal tunnel syndrome. The railway company used the blood to conduct DNA tests to ascertain whether the workers in question were genetically predisposed to the condition.

The Burlington Northern case must have resonated with President Bush. In a recent radio address, the president said he would support passage of a law preventing insurance companies and employers from using gene tests to deny certain individuals medical coverage or turn them down for jobs.

"Just as we have addressed discrimination based on race, gender and age," said Bush, "we must now prevent discrimination based on genetic information."


And maybe after the White House and Congress get around to passing a measure protecting genetic privacy, the president and lawmakers will consider legislation strengthening privacy protections for customers of financial institutions.

Such protections were supposedly included in the 1999 banking deregulation law, which set a deadline of July 1, 2001 for financial institutions to comply with certain privacy rules.

Those rules require banks, brokerage houses, insurance companies and other financial-services companies to inform customers of the kinds of information they collect and to allow customers to limit release of this information to third parties.

So the nation's financial institutions have mailed out more than a billion privacy notices to customers in advance of the July 1 deadline.

Yet, at the end of the day, those banks and brokers and insurers will be just as free to abrogate their customers' privacy rights as they were before the federal rules took effect.

There are two reasons for this.

First, as Money magazine points out in its July issue, these privacy notices are virtually unintelligible. The federal law says the notices should be written in "clear" and "reasonably understandable" language. But an analysis of 34 typical notices by the San Diego-based Privacy Rights Clearinghouse found that all 34 were written at a second-year college level or higher. Five were at graduate school level.

"They're designed, I guess, not to be understood," said Sen. Richard Shelby, the Alabama Republican who co-chairs the Congressional Privacy Caucus. I think they're designed to be thrown in the trash."

And even if a customer of a given financial institution does not throw his or her privacy notice in the trash, even if the customer takes the time to read it, even if the customer actually understands it, even if the customer signs it and returns it, the financial institution may still disclose the customer's financial information to outside companies.

That's because the 1999 law contains a loophole that allows financial institutions to pass along customer information (including name, address, Social Security number and account activity) to outside companies under "joint marketing agreements."

So if, say, a bank has a written contract with, say, an auto insurer, the bank is free to release customer data to the insurer -- whether the bank customer likes it or not.

It's because of the prospect of genetic discrimination, because of the continued trafficking in confidential financial information, because of myriad other threats to privacy, that the American people are looking to Washington for protection.

Lawmakers have to decide whether they stand with the people or with the powerful commercial interests that operate under the premise that the people have no inherent right to privacy.

JWR contributor Joseph Perkins is a San Diego Union-Tribune columnist and television commentator. Send your comments to him by clicking here.


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