NEW YORK (GenomeWeb News) – Over the last decade, Congress has repeatedly considered a single, unified law that would protect individuals from discrimination by health insurers and employers based on genetic information and would protect individual privacy for genetic test results.
As federal legislators continue to work toward passage of the Genetic Information Nondiscrimination Act — a bill designed to prohibit health insurers and employers from using genetic information improperly against consumers and employees — many of the fifty states have been plowing ahead on their own to provide citizens with some measure of protection.
Those protections are desired by many Americans, according to a 2006 survey conducted by Cogent Research. According to that study’s findings, 66 percent of Americans said they have concerns about how their personal genetic information would be stored and who would be able to access it.
That same Cogent Research study of genomics trends found that 30 percent say concerns about privacy would keep them from having a genetic test. More than 50 percent of Americans also said that they were concerned about each of the following groups having access to their personal genetic information: life insurance companies, the government, health insurance companies, banks or financial institutions, and employers.
Most states by now have something on the books to restrict the use of genetic information to set health insurance rates or to determine whether a consumer is eligible for insurance. But the approaches of different states in dealing with genetic nondiscrimination and privacy vary enough that a citizen of a given state is likely not to know what protections are in place.
As of March 2007, 32 states had laws protecting privacy of genetic information and 34 states had laws to protect individuals from being discriminated against by employers based on genetic information.
Many of these laws are aimed directly at prohibiting insurance companies from using genetic information as a basis for denying coverage or determining rates, keeping insurers from requiring genetic tests, and keeping insurers from disclosing genetic information without consent. But these state laws have gaps, explains Gail Javitt, who is the law and policy director of the Genetics and Public Policy Center at Johns Hopkins University.
The state laws “are very variable in terms of scope and in terms of the definition of the word ‘genetic’ itself,” Javitt told GenomeWeb Daily News today. “Because people move around from one state to another the scope of protection may change dramatically.”
Some of these laws consider genetic information to be only the results of a predictive test, while others may include the information merely that a genetic test was taken.
There also is variety in what constitutes consent about genetic information, as some laws may require written authorization and others may require more detailed consent. In addition, the groups or individuals the laws cover vary, and may include group insurers, individual insurers, employers, researchers, and anyone either conducting or accessing genetic information.
Javitt thinks a national law such as GINA would “create uniformity” instead of allowing “one standard in one state and one standard in another.”
Sheldon Krimsky, a Tufts University professor of Urban Development and Policy Planning who has been writing about the intersections of genetics and ethics for a quarter century, agrees that a federal law would be better than what we have, but he also feels that it should not take the states out of the equation.
“Given that not all states have laws, consumers would be best serviced if there was a minimal, uniform set of standards” Krimsky said, that would prohibit all employers including the government and insurance companies from using genetic information to make employment or insurance decisions.
“I have no doubts that without a national commitment to a non-genetic discrimination program this information will be used and misused as pre-existing conditions to keep people from qualifying for employment and insurance or will be used to raise rates for individuals,” said Krimsky.
However, federal legislation should not preempt state laws, he added, because “some of the states may have a broader protective reach than GINA.”
Among the existing federal laws that afford some protection of genetic privacy and discrimination are the Americans with Disabilities Act, the Health Insurance Portability and Accountability Act, and an executive order under the Equal Opportunity Employment Commission. The EOEC order from the year 2000 is designed to prohibit discrimination in federal employment based on genetic characteristics.
Under HIPAA, health insurers providing coverage to groups of 50 or more individuals are not allowed to deny coverage due to genetic information, but employers are allowed to restrict benefits or coverage or charge higher premiums, according to the NCSL. HIPAA also is limited to covering group insurers, and does not address employers who buy the coverage, Javitt explained.
The 1990 ADA law, which was an expansion of the Civil Rights Act of 1964, was supposed to protect only people who are disabled from discrimination, but it carried a section that extended its definition to include people who are “being regarded as having such an impairment” that could “substantially” limit one or more of the major life activities. It is that exception that has been connected to information from genetic tests or genetic information.
In addition to providing protections for consumers, Krimsky said it would be better to have a uniform law “for the sake of national insurance companies and employers.” Such a law also should have “built-in sanctions for those who violate it and an investigative arm of government” that would regulate it, such as the Equal Employment Opportunity Commission, he said.