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NORD Comes Out Against Bill Providing Employer Insight Into Employee Genetic Information


The National Organization for Rare Disorders (NORD) has come out strongly against a bill that would provide employers with insight into workers’ personal medical and genetic information.

The National Organization for Rare Disorders (NORD) has come out strongly against a bill that would provide employers with insight into workers’ personal medical and genetic information.

The Preserving Employee Wellness Programs Act is currently under consideration in the House and has yet to be considered by the Senate, but it is already making waves. For example, HHS Secretary Tom Price, MD, has expressed concerns on NBC’s “Meet the Press.” The bill would allow employers access to employee genetic and medical information through workplace wellness programs and would increase financial penalties for people who opt out of participating in the programs.

“This bill would roll back decades of critical patient protections and allow unscrupulous employers to punish individuals for their genetic makeup through insurance or workplace discrimination,” the organization said in a statement. “The privacy of millions of individuals with rare diseases could be violated by making incredibly personal and private genetic information legally accessible to employers under the threat of harsh financial punishment.”

Currently, the Americans with Disabilities Act (ADA) and the Genetic Information Nondiscrimination Act (GINA) do not allow genetic testing to be required or even requested by employers. Genetic testing can be offered as part of a wellness program, and the employee has to elect to join the program for employers to see the results.

The American Society of Human Genetics (ASHG) believes that the bill would fundamentally undermine the privacy provisions of ADA and GINA. In addition, the financial penalties that employers can impose could mean employees might pay thousands of dollars extra in premiums if they choose not to share genetic and medical information.

There is, however, support for the bill. The ERISA Industry Committee (ERIC), a national association advocating for large employers, urges lawmakers to vote for the bill.

"If enacted, this bill would force Americans to choose between access to affordable healthcare and keeping their personal genetic and health information private," Derek Scholes, PhD, director of science policy at ASHG, said in a statement. "Employers would be able to coerce employees into providing their genetic and health information and that of their families, even their children."

“This legislation will untangle conflicting, burdensome, and unnecessary rules that are currently jeopardizing the ability of employers to offer quality wellness programs, and the opportunity for employees to earn significant savings on their health insurance premiums while also improving their health,” James P. Gelfand, senior vice president of health policy at ERIC, wrote in a letter to members of the House Committee on Education and the Workforce.

ERIC believes that the Preserving Employee Wellness Programs Act will “restore balance” and remove the new “onerous and restrictive” regulations put in place by the Equal Employment Opportunity Commission.

The bill, which was introduced by Representative Virginia Foxx, R-North Carolina, passed the House committee on a straight party-line vote. It will likely continue to face opposition from House Democrats, as well as organizations like NORD.

“NORD will do everything in our power to prevent this bill from moving forward in its current form,” the organization promised. “We will work with our over 260 member organizations and thousands of intrepid patient advocates to ensure this bill does not become law.”

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