Insurers walk fine line on DNA tests

For most insurance companies, the message on genetic testing is: Don't order genetic tests, even if you know they're available."

That is the trend today, said Charlotte A. Lee, M.D., of Osborn Laboratories, Olathe, Kansas, in a seminar here on genetic testing in the insurance industry.

There is no official document saying that insurers voluntarily agree not to test, the doctor stressed, explaining that anti-trust issues may prohibit such agreements.

Still, she said, most do avoid asking for the tests.

However, she added, if an applicant's attending physician's statement indicates a genetic test has been run on the person, insurance companies do want to see those test results. Insurers need to have access to all information applicants have, in order to avoid anti-selection, she said.

Her remarks came during a packed session at the annual meeting of the National Association of Independent Life Brokerage Agencies.

The public today dislikes the process of risk classification in general, Lee said, and one reason for this dislike may be the public doesn't understand what it is that actuaries do. This may prompt some to wonder, "are the rate classes based on sound studies?"'

Furthermore, some people believe underwriters make mistakes. "They don't know that underwriters have manuals they consult, and that the companies have medical directors and registered nurses on staff," Lee said.

Some also believe applicants are being set up by "purposely misleading" application questions, and/or they feel the risk classification process violates privacy, she said.

Others complain the risk classification process discourages good medical care, she said. "They contend people won't go to the doctor, due to worries the information will go to the insurance company."

Some even say it's "unfair" for insurers to charge some people more than others or to deny coverage, Lee noted. "They think it's a basic human right to be able to get insurance. They don't want the companies to differentiate." Some contend some under-writing practices are illegal, too, she added.

Genetic testing raises different concerns, she noted. For one thing, one's DNA information is seen as being "more personal" than any other types of information.

It's also viewed as being predictive, she said, because genetic test results may give information about future risks-"information that could determine a person's outcome.

However, genetic information also has the power to change lives, she said. If one learns, for instance, of the presence of a gene for a dread disease, "that knowledge could change how the person patterns his or her whole life."

Genetic testing also raises other issues, Lee said. Who will have access to the genetic records? Since this testing is "pedigree-sensitive," what is the effect on one's relatives? Are the results "here to stay," in the records of the physicians? Will the data be used prejudicially, to discriminate?

As far back as the late 1980s, the life insurance industry was looking at these issues and how insurers can respond, Lee noted. In 1989, for instance, the Medical Section of American Council of Life Insurers put out a monograph on the subject. The messages contained in that document-regarding the need for education, bioethical focus, public dialogue, and much more-hold true today, she indicated.

She reviewed the messages, and the implications for insurers.

In sum, genetic testing has both advantages and potential disadvantages for people, she said, but they continue to be concerned about the accuracy, cost, and related issues.

The pros and cons-and the concerns-are not likely to go away, she suggested. For instance, gene therapy and stem cell therapy are both on the horizon, and each holds the promise of helping people heal from certain diseases and medical ailments.

"But there's a downside, too. That's the possibility of bio-terrorism and stealth viruses...These are the negative things that can happen when people can alter genes."