A controversial new bill being pushed by House Republicans could soon allow employers to require genetic testing of their workers or force them to pay penalties of thousands of dollars for refusing. This bill threatens employee privacy and opens the door to genetic discrimination in the workplace.
Overview of the Bill
- Introduced by Rep. Virginia Foxx (R-NC), chair of the House Education and Labor Committee
- Known as the Preserving Employee Wellness Programs Act (HR 1313)
- Would allow companies to require genetic testing as part of “workplace wellness” programs
- Employees could be charged over $2000 in higher premiums for opting out of testing
- Bill passed committee vote along party lines and could get folded into larger GOP health bill
Why Critics Are Concerned
Privacy advocates medical experts and Democrats have voiced serious concerns about the implications of this bill
- Would undermine protections for genetic privacy in landmark GINA law
-Employers could see employees’ private health and genetic info
-Could lead to discrimination based on health risks and preexisting conditions - No evidence wellness programs improve health or lower costs
- Employees already pay thousands more for opting out of screenings
- Vas potential for genetic info to be shared with third parties
Jennifer Mathis of the Bazelon Center for Mental Health Law said this bill would “eviscerate” genetic privacy protections. It conflicts with both GINA and the Americans with Disabilities Act.
What the Bill Would Allow Employers to Do
If passed into law, here is what employers could start demanding of their workers:
- Mandatory genetic testing to screen for health risks
- Access to full genetic profiles and family medical histories
- Financial penalties upwards of $2000 for opting out of testing
- Wellness programs that collect intimate health data and DNA
- Discrimination based on preexisting conditions or genetic risks
This differs from current laws that limit how genetic data can be collected and used by employers. Protections on genetic privacy would essentially be dismantled.
Genetic Testing and Privacy Concerns
Genetic testing provides insight into personal health risks and predispositions But it also raises important privacy issues
- Testing reveals medical info about spouses, children, and relatives
- Data could be shared with insurance companies to set rates
- Employers can make hiring and promotion decisions based on health risks
- Genetic discrimination despite laws intended to prevent it
Employees shouldn’t have to choose between genetic privacy and affordable healthcare.
What Supporters of the Bill Argue
Proponents of the bill argue it would expand access to workplace wellness programs and lower healthcare costs. However, credible studies show wellness programs do not significantly improve health or reduce costs. Many actually lose money overall.
Potential Impact on Employees Nationwide
If passed into law, this bill would impact private sector employees at companies across the country:
- 6 million already enrolled in workplace wellness programs
- 70% of large firms offer some type of wellness program
- 30% of employers plan to add wellness initiatives by 2025
Tens of millions could potentially be required to undergo genetic testing or disclose private medical info to keep their jobs.
This bill threatens health privacy and protected classes under the ADA. Contact your representatives in Congress to voice your support or opposition. Protecting genetic privacy while expanding access to healthcare should be the priority.
