Genetics Rule Could Hamper Wellness Efforts

Collecting family history is protected under current HIPAA statutes and the information is used to figure out which members would benefit most from enrolling in a wellness or disease management program. Instead of having that information available, health plans and population health management companies would have to ask members to self-identify, which Moorhead says is not the best way to help members manage their risk factors and chronic conditions.

"Certainly, it is not our intent to utilize health risk assessment-derived information for any purpose other than to promote the health and wellness of these populations. This information is currently protected by HIPAA and we fully support the intent of the GINA legislation and implementing regulation. However, we are very concerned about what we believe are the unintended consequences of this regulatory interpretation," says Moorhead.

If the interim rule remains, John Griffin, chief operating officer at HealthFitness, a Minneapolis-based wellness company, expects companies will remove the family history questions from HRAs. Griffin says HealthFitness' HRA, which is about 80 questions, includes two family medical history questions.

"Almost all HRAs will be intact, but we and everyone I have talked to will remove any family medical history in those HRAs," says Griffin.

Though only two questions, the results allow HealthFitness to reach out to people with family history health problems, such as cancer or heart disease, and target interventions. For instance, HealthFitness may ask women with a family history of breast cancer to get tested earlier than women without breast cancer in their family. Griffin says the interim final rule would have the biggest effect on disease management companies and programs because they deal with chronic disease.

DMAA recently sent a letter to the Senate leaders asking for clarification of the underwriting definition and asked for an immediate moratorium on the GINA regulation implementation.

The interim final rule is scheduled to take effect December 7, but the agencies will accept comments on it until January 5, 2010.

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