Senate: Genetic data are private

Bill passes prohibiting insurers, employers from misusing test results

The measure could even help companies that specialize in genetics tests, says one biotech executive.

Freshman Del. Roger Manno (D-Dist. 19) of Silver Spring, who introduced the legislation, said he expects Gov. Martin O’Malley (D) to sign the bill based on support he’s gotten from Lt. Gov. Anthony G. Brown (D).

The bill addresses what Manno calls ‘‘a major loophole” in state law that allows companies to discriminate though collecting and using genetic data.

Lacking a comprehensive federal law, 32 states have crafted their own statutes banning such discrimination. Maryland was one of the first; the 1995 law was sponsored by Sen. Jennie M. Forehand (D-Dist. 17) of Rockville, also a sponsor of the current Senate bill.

Genetic tests can predict if a person is at risk for devastating diseases such as Alzheimer’s, lung and breast cancer, and more than 1,500 other medical conditions, according to the National Institutes of Health’s GeneTests Web site.

‘‘Genetic testing is progressing at a rate that’s hard for us to keep up with,” wrote Dr. Robert W. Griffith, a contributing writer for the Health and Age Foundation, in 2006. ‘‘While improved prediction testing may provide better opportunities for individual prevention regimes, one must realize that medical insurance companies already have an almost intrusive interest in the likely future health of their clients, and genetic testing may provide a tempting tool.”

A 2007 survey by Johns Hopkins University’s Genetics and Public Policy Center showed that while more than 90 percent of Americans support researchers and physicians using genetic tests, 93 percent said employers and health insurers should not be able to use such data to make decisions about hiring, promotions, or insurance limitations or pricing.

‘An issue of fear’

By banning discrimination — thereby eliminating fear of data abuse by insurers and employers — the legislation could be a boost for companies that provide such tests, said Sherri J. Bale, president and CEO of GeneDx, a young Gaithersburg company that tests for 160 rare diseases.

Bale said the legislation was ‘‘certainly a good idea” that, combined with similar federal legislation now in Congress, may allay people’s fears of discrimination and failure to get coverage.

‘‘I think there are not a lot of specific cases where this [discrimination] is happening, but it is more of an issue of a fear, while it is important to identify the morbidity of a disease,” Bale said.

Manno said that insurers vigorously fought a first draft of the House bill, a group of health care experts and lawmakers banged out compromising language with lobbyists for insurers, including the American Council of Life Insurers.

Remaining is a provision banning use of genetic markers, a critical element for consumers, he said.

‘‘I could not give up my belief that insurers should not be allowed to discriminate based on genetic markers for a given disease that have not yet manifested into a condition.”

He explained that just because the mother, father or grandfather of a black person had sickle cell anemia or an Ashkenazi Jew carries the marker for Tay-Sachs disease, it does not mean those diseases will manifest themselves.

‘‘So the insurance companies, in all fairness, should not be able to call that a pre-existing condition and, therefore, deny you coverage,” Manno said.

Representatives of two of the state’s major insurers, United Healthcare and CareFirst BlueCross BlueShield, declined comment.

Carrie Harris-Muller, chief administrative officer for Kaiser Permanente of the Mid-Atlantic States, supports the bill, especially as it will protect seniors.is considering offering long-term care insurance, she said.

Susan R. Panny, director of the Office for Hereditary Disorders at the state health department, said, ‘‘We are very pleased that the insurance industry was willing to work with the advocates to reach this compromise bill.

‘‘Making long-term care insurance available to as many people as possible will allow more people to be financially independent at the end of their lives. Long-term care is not covered by Medicare or traditional health insurance.”