Originally published Feb. 11.
By Turna Ray
In Massachusetts, the Forum on Genetic Equity has introduced a Genetic Bill of Rights that seeks to protect state residents from genetic discrimination in life insurance, auto insurance, and in establishing credit — areas currently unprotected by federal genetic antidiscrimination laws.
The Massachusetts Genetic Bill of Rights is co-sponsored in the state legislature by two Democrats, Senator Harriett Chandler and Representative Ellen Story. The bill, as of Feb. 5, has the support of four other state senators and 13 state representatives, all of them affiliated with the Democratic Party. The Forum on Genetic Equity, an advocacy organization that tries to advance policies that protect consumers and patients against genetic discrimination, crafted the bill.
According to the text of the legislation, the Genetic Bill of Rights would establish that "individuals have an expressed right to privacy with respect to genetic information and material." Furthermore, the bill lays out the following rights regarding a person's genetic data: genetic information and material is personal property; healthcare providers cannot deny treatment and wellness services solely based on a gene marker; life, long-term care, and disability insurers cannot use genetic data to set premiums or deny insurance; auto insurers cannot consider DNA data in setting policies and rates; and such information cannot be used to determine credit worthiness.
Specifically, the bill would restrict MassHealth ─ the state program responsible for providing comprehensive health insurance to residents ─ from denying state residents coverage based on a genetic marker. Also under the bill, breaches in DNA information must be reported to law-enforcement officials and those who commit identity fraud through the unauthorized use of others' genetic information would face legal penalties.
According to Steve May, executive director of the Forum on Genetic Equity, existing Massachusetts law already goes far beyond federal law in offering protections against genetic discrimination. Eight years before Congress passed the Genetic Information Nondiscrimination Act, Massachusetts advanced its own Genetic Privacy Package in 2000, which restricted discrimination based on genetic information in health insurance and employment settings.
GINA forbids insurers and employers from using people's genetic data in making insurance coverage and employment decisions, but only up to a point. For example, GINA does not prohibit insurers from using genetic information to make determinations about pre-existing conditions, and payors can also use DNA data to make decisions about paying for pharmacogenomically guided treatments. Importantly, the federal law doesn't address creditors, auto insurers, and life insurance firms.
Massachusetts' Genetic Bill of Rights enumerates state residents' existing rights, and pushes for additional protections in areas that GINA does deal with.
The bill would create an expressed right to genetic privacy, which currently doesn't exist in the state constitution. It would give genetic material the status of personal property, another point that current law is silent on. The legislation would further mandate that labs handling genetic material are certified under the Clinical Laboratory Improvement Amendments, at minimum.
Additionally, the bill provides increased protections for genetic material used in academic and scientific research, including comparative effectiveness studies, which have recently received significant federal funding. Any entity that would want to use a person's genetic information for research purposes would need his or her consent to access and use their genetic data.
"The completion of the effort to map the human genome created circumstances resulting in efforts to monetize the research and its associated work product. As such, an environment where public health realities superseded the existing regulatory apparatus has evolved, throwing the public policy regime into a state of ambiguity," the Forum on Genetic Equity said in a statement. "The introduction of [the Genetic Bill of Rights] is an effort to deepen and broaden the progress Massachusetts made a decade ago in balancing the interests of the public, while simultaneously fostering a climate conducive to innovation and prosperity for those engaged in important research."
Most importantly, the bill would restrict auto, life, disability, and long-term care insurers from using genetic data in their underwriting. While Massachusetts forbids genetic discrimination in these settings, these insurers can still use DNA information in underwriting if they show financial justification.
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"Currently, genetic information and genetic material are available to auto, life, disability, and long-term care insurers for use in underwriting these financial devices as part of their business operations as part of the 1999 Gramm Leach Bliley Financial Modernization Act," the Forum on Genetic Equity explained in a statement. Under the Genetic Bill of Rights, "these insurance products would be deemed a public accommodation under state law … and would be subject to a guaranteed issue scheme." However, insurance companies will still be able to set their own rates.
May explained that the standing of life insurance companies with regard to their use of genetic information has stalled at a complicated middle ground. It essentially amounts to a policy of "don't ask, must tell," according to May. "The insurers couldn't ask if a genetic test had been done, but if a test had been done and it was considered actuarially sound, an individual had to disclose its existence during the application process," he said. "It's a convoluted mess."
The Genetic Bill of Rights would also protect people's genetic data from differential treatment by auto insurers. Under the 1999 Gramm Leachy Bliley Financial Modernization Act, auto insurers can also use genetic data in underwriting.
"We believe that auto insurance constitutes a public accommodation under the law," the Forum on Genetic Equity states. "We believe that without definitive curbs to stop conduct, it is inevitable that auto insurers would differentially price coverage for a person who has a marker for epilepsy or cardiac problems. For example, they might be asked to pay higher rates based solely on the presence of a genetic marker, but without having experienced actual onset of a medical episode. In doing so, they will argue they are undertaking a higher level of risk and should be financially rewarded."
Chances of Passage
According to analysis by the Forum on Genetic Equity, seven states prohibit genetic discrimination in life insurance without actuarial justification, and even fewer states ban genetic discrimination in disability and long-term care insurance without financial justification. Meanwhile, several states mention life, disability, or long-term care as exclusions to their genetic nondiscrimination legislation.
Since this current legislative effort in Massachusetts seeks to provide genetic protections in areas currently not provided by GINA, there is some question as to whether insurers will lobby against the bill. According to policymakers on Capitol Hill who labored for more than a decade to pass the federal genetic anti-discrimination law, there was little chance of GINA's passage without a life insurance exemption.
Sharon Terry, president of Genetic Alliance, a non-profit group that led the battle on Capitol Hill to garner federal protections for genetic information in health insurance and employment, believes that GINA would have had "no chance" of passing if life insurers were included in the bill (PGx Reporter 03/30/10).
In the payor community, health insurance is considered to be different in scope and societal function from life insurance, since the former grants individuals access to health services by reimbursing doctors, hospitals, and pharmacies, and the latter provides financial protection to individuals and their families. As such, most payors believe that validated gene alterations associated with disease risk are no different than other clinical factors — such as age, sex, smoking, and family history — in making underwriting decisions.
The Forum on Genetic Equity is of the contrasting view that denying someone insurance based on the probability that they might get a disease is still discriminatory. "It's our position that … it is unlawful to preclude an individual from entering into a contract on the basis of an event which may or may not actually occur — even where the determination of a marker which identifies a condition that upon onset will be lethal, because onset may now occur fifty, sixty, seventy years or more into the future," May said. "An individual cannot be prohibited from entering into a contract for goods or services simply because they are a member of a class of persons."
In this case, he said, "failing to let folks contract for insurance coverage, when there is no guarantee that their life will definitely end because of a future illness, is unacceptable."
Despite the ambitious nature of the Genetic Bill of Rights, and the fact that it currently lacks support from the Republican side of the aisle, May is not worried about its chances of passage in the state legislature.
"The Massachusetts legislature is overwhelmingly Democratic," May said, noting that although there are a lot of new Republican faces in the state House of Representatives, the state Senate is still Democrat-controlled, with 36 Democrats and four Republicans.
"Certainly, there are principles in the bill consistent with the Rockefeller wing of the Republican party. We certainly do not see the principles in the bill as being left or right leaning," May said. "From our perspective, ideas like 'fairness' do not come with a D or an R after them."
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