[Harrison]

If anyone is considering getting genetic testing out of curiosity, you may want to think this through carefully. In the near future, if you change insurance carriers, you may have to provide that company information on your genetic test results (if they don’t already have it!). Articles I’ve read stated that this requirement was the federal law, but I am not sure if this is true, or if these laws are in flux.

Long term care insurance companies are still enjoying an odd loophole -- that may or not be fixed. This article below points to concerns from the patient perspective. If any of you have any updates on this Orwellian issue, please do share.
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Friday, Jan. 30, 2009
Privacy concerns are target of DNA bill
Legislation would forbid insurance companies from using genetic tests to reject clients, change rates
by Douglas Tallman | Staff Writer

ANNAPOLIS — Lawmakers are being asked to ponder an issue with "Brave New World" overtones. Should Maryland prevent discrimination based on the contents of a person's DNA?

"This is not unlike any other kind of discrimination in this country or in the world," said Del. Roger Manno on Tuesday before the House Health and Government Operations Committee.

"It's more sophisticated. It's more elusive. It's less understood, but it is discrimination just like any other type."

Manno (D-Dist. 19) of Silver Spring has introduced bills that would forbid insurance companies from using genetic tests to reject or change the rates in life insurance and disability insurance. The bills follow legislation enacted in 2008 that forbids discrimination in long-term care insurance.

In the 1990s, Maryland was one of the first states to prohibit genetic discrimination in health insurance.

"We're hitting all the major loopholes that exist," Manno said in a recent interview. "If we were to pass this, there's no doubt in anybody's mind that Maryland would be at the apex of genetic privacy and protections in the United States, maybe in the world. But this is a pretty ambitious agenda."

The 1990s legislation was sponsored by Sen. Jennie M. Forehand, who is the Senate sponsor on the 2009 bills.

"I think that some of these issues, as the research goes on, we need to get them clarified," said Forehand (D-Dist. 17) of Rockville.

Although the 2008 bill was passed after the legislature and the insurance industry reached a consensus, the 2009 bills are meeting resistance.
Insurance carriers are concerned about "information asymmetry," when customers know more about their health than the insurance company can find out from the medical reports to which applicants provide access.

If a person professes to have a clean bill of health, but has a genetic test that states otherwise, the person could receive life insurance at an incorrect premium, said Deborah Rivkin, a lobbyist representing insurance companies.

"When that happens too much — because people start coming in and getting information and knowledge that we don't have — the prices go up, because we haven't quoted the correct premium and the healthy individuals leave," Rivkin told lawmakers.

Besides, she said, insurance companies don't use genetic tests because they are inaccurate and expensive.

"Everything you heard today is not based on what's happening today," Rivkin said. "It's based on a fear of the unknown and a fear of something that may happen in the future."

She said that within 10 years, people will be able to order tests over the Internet, and the information could be shielded even from their own doctors.

Until then, genetic markers now help set the price of life insurance, said Ken McKusick, vice president of product development at Monumental Life in Baltimore.

"We're using these factors in order to differentiate and to rate, but in general not to decline. That's an important characteristic because no insurance company ever made a buck from anybody they declined," McKusick said.

But Del. Donna Stifler offered her family's story with cancer, which revealed her own fears of being declined for insurance. Tests have shown several relatives carry the marker for a cancer gene, she said. Several members have died or have had prophylactic surgery to remove breasts or ovaries.

She and some other members have refused to be tested, however.

"I refused and have refused to this day because I was young enough to be fearful of the manifestations of insurance discrimination," said Stifler (R-Dist. 35A) of Forest Hill.

She asked if a fear of discrimination was placing a risk on her family's health.

"We should not have the hindrance and the fear of denied insurance," she said.

After the hearing, Rivkin said existing laws should protect Stifler and her family.

Disability insurance offers another wrinkle.

Because it provides income protection as opposed to paying health claims, the coverage is different from health insurance, said Leah Walters, legislative director of the American Council of Life Insurers.

However, the National Conference of State Legislatures says 15 states have some form of restriction on discrimination in disability insurance.

Manno said he introduced the bill to clarify state law. Other statutes that affect health insurance also affect disability insurance, he said.

Regarding the "genetic loophole," he said that people are "getting turned away or summarily denied policies simply because there was a modicum of risk that they would somehow, someday get sick," he said in an interview. Insurance, he said, should manage risk, not eliminate it. If you take a large pool of people, some are high risk and very sick, and some are very healthy, and most are in between.

"By spreading that high risk over a large number of people, it makes it profitable for the companies, and it also reduces premiums," he said.

The delegate also has filed a bill that would allow individuals who believe they are the victims of genetic discrimination from their insurance carrier to file a claim in court. Under current law, the state's insurance commissioner would settle a claim, and damages could include restitution and the loss of an insurance carrier's certification.

"The commissioner has the authority to yank an insurer's right to do business in the state," said Marta D. Harting, a lobbyist representing State Farm. "I don't know what stronger incentive you need than that to prevent carriers from violating the law."

A legislative analysis said eight states allow individuals to take a genetic discrimination claim to court.

In the interview, Manno allowed that the bills have an uncertain fate.

"What I'm learning down here is, if you make progress on one issue one year, don't necessarily expect that you can come back the next year and expand it," he said. "It may take several years to get another bite at the apple."

Full article at:
http://www.gazette.net/stories/01302009/polinew200902_32506.shtml