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Genetic Privacy Protection Weakened by Recently Revised EEOC Regulations, ASHG Says

NEW YORK (GenomeWeb) – The American Society of Human Genetics said this week that it opposes recent revised regulations by the US Equal Employment Opportunity Commission (EEOC) that affect the American with Disabilities Act (ADA) and the Genetic Information Nondiscrimination Act (GINA).

EEOC proposed the changes, which apply to employer-backed wellness programs, last year and provided stakeholders with an opportunity to comment by the end of January. A number of advocacy groups and stakeholders objected to the proposal, arguing that it would weaken genetic anti-discrimination protection.

ADA and GINA allow employer-sponsored wellness programs to request medical or genetic information on a voluntary basis, according to ASHG. However, under the final new regulations, issued yesterday, employees who decide to keep their own and their spouses' health information private may have to pay "significantly higher health insurance premiums" than those who share their information, ASHG said.

For example, for health plans that cover an employee and his or her spouse, the employee could be required to pay up to 30 percent more per person than the cost of self-only coverage.

"The new EEOC rules mean that Americans could be forced to choose between access to affordable healthcare and keeping their health information private," said Derek Scholes, ASHG Director of Science Policy, in a statement.

He also noted that people might be less willing to participate in the Precision Medicine Initiative, which provides participants with genetic results, "out of fear that they will be coerced into reporting these results to their employers' wellness programs." 

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