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HIPAA to be expanded to include protection of genetic information – proposed HHS rule

October 2, 2009 by Naomi Redding

Genetic Information
There’s a proposed rule that impacts HIPAA and GINA – no, that’s the name of a specific patient but rather the Genetic Information Nondiscrimination Act of 2008 (shortened to GINA). The proposed rule was issued on October 1, 2009 by the U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR) and provides individuals new privacy and nondiscrimination rights with respect to the use of their genetic information in employment and heatlh insurance decisions.

For example, genetic information might include screenings for diseases such as Huntington’s Disease, early onset Alzheimer’s, or breast cancer just to name a few. In the past some women have declined breast cancer screenings for fear of the ability to get and keep health insurance. This just doesn’t make sense, and the new rule addresses this: “The proposed rule would modify the HIPAA Privacy Rule to clarify that genetic information is health information and to prohibit the use and disclosure of genetic information by health plans for underwriting purposes.”

The bottom line? Genetic information can’t be used to discriminate for employment or underwriting purposes. The proposed ruling is subject to a 60 day comment period.

You can read more here.

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Posted in: HIPAA News, HIPAA Regulations Tagged: Genetic Information, GINA, HHS rule, HIPAA, Privacy

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