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Genetics Rule Could Hamper Wellness Efforts

Les Masterson, for HealthLeaders Media, October 29, 2009

An interim final rule from the Genetic Information Nondiscrimination Act of 2008 (GINA) could cripple wellness, disease management, and population health management programs, according to DMAA: The Care Continuum Alliance, employer and wellness groups, and health insurers.

The departments of Health and Human Services, Labor, and Treasury offered a joint final regulation of GINA earlier this month that would have unintended consequences, says Tracey Moorhead, president and CEO of DMAA, formerly called the Disease Management Association of America.

President George W. Bush signed GINA into law on May 21, 2008 after the legislation passed Congress with only one opposing vote. The goal behind GINA is to stop discrimination in insurance and employment based on genetic information. Moorhead says the legislation defined "‘underwriting purposes' in a traditional manner," such as computing premium and contribution amounts under a health plan.

However, the joint final regulation goes well beyond that underwriting definition and includes discounts, rebates, payments, and premium differential mechanisms that are paid to people for completing health risk assessments (HRA) or participating in wellness programs, she says.

In announcing the new regulations this month, the three departments trumpeted that GINA will "help ensure that genetic information is not used adversely in determining healthcare coverage and will encourage more individuals to participate in genetic testing, which can help better identify and prevent certain illnesses."

They added that the interim final rule would not allow group health plans to increase premiums based on a member's genetic information, or deny enrollment, impose pre-existing condition exclusions or conduct "other forms of underwriting based on genetic information," according to the Department of Health and Human Services.

However, Moorhead says the final interim rule goes beyond the intent of the legislation that protected the use of employer wellness programs. It also prohibits collecting family health history prior to enrollment in a group plan and treats family medical history as genetic information.

"We do not believe that Congress intended to have this adverse impact on employer wellness programs. In fact, we believe this is in direct conflict not only with the current administration's goals in terms of prevention and wellness and health promotion that we have heard President Obama repeatedly talk about as a goal for his healthcare reform initiative, but also in direct conflict with the congressional goals for healthcare reform," says Moorhead.

These provisions would not allow health plans, employers, and disease management, wellness, and population health management organizations to use family history data to find at-risk members and could not use incentives to spark them to take part in wellness and disease management programs. The result would be fewer at-risk people involved in prevention programs (more than 70% of employers currently provide incentives to drive employee participation), higher chronic disease rates, and ultimately higher healthcare spending, says Moorhead.

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