U.S. Issues Rules to Protect Patients’ Genetic Information

October 14, 2009

Individuals’ genetic information should have greater protections through new regulations that have been issued by the U.S. Departments of Health and Human Services (HHS), Labor, and the Treasury.

The rules– which are interim pending further public comment– are designed to ensure that genetic information is not used adversely in determining health care coverage and to encourage more individuals to participate in genetic testing, which can help better identify and prevent certain illnesses.

Under the new rule, group health plans and issuers in the group market cannot: increase premiums for the group based on the results of one enrollee’s genetic information; deny enrollment; impose pre-existing condition exclusions; or do other forms of underwriting based on genetic information.

In the individual health insurance market, issuers are prohibited from using genetic information to deny coverage, raise premiums, or impose pre-existing condition exclusions.

Further, group health plans and health insurance issuers in both the group and individual markets cannot request, require or buy genetic information for underwriting purposes or prior to and in connection with enrollment. Finally, plans and issuers are generally prohibited from asking individuals or family members to undergo a genetic test.

“Today’s genetic technologies yield data that are vital to helping Americans make personal, medical decisions. It is essential that we protect such information and ensure it is not misused by health plans or insurers,” said Labor Secretary Hilda L. Solis. “The rules issued today protect individuals against the unwarranted use of information related to their personal health because no one should have to fear that disclosure of their medical data will put their job or health coverage at risk.”

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