Genetic Nondiscrimination Rule Unveiled

Regulation Spells Out Privacy Protections

By , November 10, 2010.
Genetic Nondiscrimination Rule Unveiled

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ederal regulators have published a final rule carrying out the Genetic Information Nondiscrimination Act, which prohibits the use of genetic information to make decisions about health insurance and employment.

The Act, enacted in 2008, protects job applicants, current and former employees, labor union members and apprentices and trainees from discrimination based on their genetic information. To protect privacy, it restricts employers from requesting, requiring or purchasing genetic information and strictly limits them from disclosing genetic information.

The final rule is effective Jan. 10, 2011.

Protecting Genetic Information

The Equal Employment Opportunity Commission, which approved the rule, notes in an introduction that experts predict tremendous strides in the new field of genomic medicine will occur this century, bringing it into mainstream medicine. "But just as the number of genetic tests increases, so do the concerns of the general public about whether they may be at risk of losing access to health coverage or employment if insurers or employers have their genetic information."

Congress passed the Act "so the general public would not fear adverse employment or health coverage-related consequences for having a genetic test or participating in research studies that examine genetic information."

In addition, the U.S. Department of Health and Human Services is preparing a rule to clarify that genetic information is health information that's protected under HIPAA and to prohibit health insurers from using or disclosing genetic information for underwriting purposes.

Personalized Medicine

Personalized medicine research, which relies on genetic information paired with electronic health records, could pave the way for many treatment breakthroughs. For example, diabetics could get the precise therapy they need, based on their genetics, to avoid amputations.

But this type of research raises significant privacy and security issues. To address these concerns, pioneering medical centers are setting up systems to ensure that personalized medicine researchers only can access de-identified genetic and EHR information.

Follow Howard Anderson on Twitter: @HealthInfoSec

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