Genetics data law raises concern

Genetics data law raises concern

February 14th, 2010 by Emily Bregel in News

Among employers and legal experts, debate is ongoing about whether a new law to restrict employers' and insurers' use of genetic information is a necessary protection against discrimination or just a hindrance to business efforts to cut health care costs.

The federal law, called the Genetic Information Nondiscrimination Act, went into effect last year. It prohibits health insurers and employers from using genetic information to determine insurance coverage or rates, or to make hiring, firing and promotion decisions.

Insurers and employers also are prohibited generally from using incentives to encourage workers to take health risk assessments that ask about genetic tests or family medical history.

Paul Lombardo, a law professor at Georgia State University in Atlanta, said the law applies some much-needed consistency across a patchwork of state-level genetic discrimination laws. About 45 states have laws related to genetic discrimination, he said.

"The laws were just kind of all over the place," he said. "There was a lot of complaint in the last 10 years from employers who were multistate about what law they were supposed to follow."

Some argue that enough protections already exist in state and federal legislation to ensure that genetic information -- such as a family history of cancer -- won't be used unfairly by employers.

The new law's provisions in that area are "clearly overkill," said John Harris, vice president of innovation and chief wellness officer with HealthWays, a health management company in Franklin, Tenn. The company offers health risk assessments and other wellness programs to entities such as employers or insurers.

"There are plenty of other protections that go plenty far enough," he said.

Nevertheless, the company has stripped its health risk assessment of questions relating to family history to ensure compliance with the new law because most of the employers or insurers it contracts with want to use incentives such as cash or premium reductions to encourage people to participate, Mr. Harris said.

At Applied Health Analytics, a population-health management company in Nashville, lawyers for the company have interpreted the law to mean family history questions still could be included in health risk assessments so long as any incentives offered by an employer are completely independent of any genetic information gleaned in the assessments.

"We put a wall between the provision of family history information and the employer. They don't get it, can't have it, can't use it, can't incent with it," said Bob Chamberlain, CEO of the company.

Still, he said, the new federal law is "one of the stupidest laws I've ever heard of."

"Candidly, I've never heard a single (discrimination) issue arise out of family history issues at all," he said.


In Tennessee and Georgia, state law already provides that health insurers can't use genetic test results -- such as tests for an gene abnormality that makes women at high risk for breast cancer -- to cancel or deny health insurance, Dr. Lombardo said.

Misuse of genetic information long has been a problem, he said. For example, in the 1970s genetic discrimination based on the presence of a sickle-cell anemia gene was widespread in employment and insurance, prompting laws to protect those who are carriers of the gene whether or not they have the disease, he said.

"The question still remains whether this (Genetic Information Nondiscrimination Act) was necessary, and the answer is we don't know," he said. "It certainly makes people pay attention to practices that may have been questionable. ... The real issue here is that people are scared to death about losing their health insurance."


The following information is protected under the Genetic Information Nondiscrimination Act:

* Results of a genetic test, an analysis of human DNA, RNA or chromosomes that detects genetic genotypes mutations or chromosomal changes. Routine lab work, such as cholesterol tests or blood counts, are not genetic tests.

* Genetic tests of an individual's family members

* Genetic tests of a fetus or pregnant family member's fetus

* Manifestation of a disease or disorder in family members (family medical history)

* Requests for genetic services or participation in clinical research that includes genetic services by the individual or a family member

Source: U.S. Department of Health and Human Services

The anti-discrimination goals of the new law are important protections, but the law is too broadly drawn, said Jerry Burgess, president and CEO of the nonprofit HealthCare 21 Business Coalition. The Knoxville-based nonprofit organization comprises employer groups and focuses on improving the quality and cost of health care.

Employers, particularly those who fund their own health insurance plans, already have systems set up to isolate medical information collected by benefits staff from those in a position to make employment decisions, he said.

"There's already a firewall between the benefits people and the employment office" as required by the Health Information Portability and Accountability Act, Mr. Burgess said. "The question becomes: How come (genetic information) can't be treated the same way?"

The new law also extends the confidentiality protections afforded by HIPAA explicitly to include genetic information.

Tony Hullender, associate general counsel for BlueCross BlueShield of Tennessee, said most insurers already are treating genetic information as highly confidential. But the new federal law's inclusion of family history in the definition of genetic information was a notable change, he said.

He said he thinks that, for future generations, the law could turn out to be a more crucial protection than it appears to be today.

"As we sit here today, it seems like overkill, but who knows what's going to happen in the future with genetic testing," he said.