Media Contact:

Nalini Padmanabhan

ASHG Communications Manager

301.634.7346

press@ashg.org

For Immediate Release

Wednesday, March 8, 2017

8:30 am U.S. Eastern Time

Bill Would Undermine Genetic Privacy Protections

BETHESDA, MD – The American Society of Human Genetics (ASHG) opposes H.R.1313, the Preserving Employee Wellness Programs Act, introduced on March 2 and scheduled for markup by the House Education and the Workforce Committee today. If enacted, this bill would fundamentally undermine the privacy provisions of the Genetic Information Nondiscrimination Act (GINA) and the Americans with Disabilities Act (ADA).

“We urge the Committee not to move forward with consideration of this bill,” said ASHG president Nancy J. Cox, PhD. “As longtime advocates of genetic privacy, we instead encourage the Committee to pursue ways to foster workplace wellness and employee health without infringing upon the civil rights afforded by ADA and GINA.”

A key component of ADA and GINA is that they prevent workers and their families from being coerced into sharing sensitive medical or genetic information with their employer. For GINA, genetic information encompasses not only employees’ genetic test results but also their family medical histories. H.R.1313 would effectively repeal these protections by allowing employers to ask employees invasive questions about their and their families’ health, including genetic tests they, their spouses, and their children may have undergone. GINA’s requirement that employees’ genetic information collected through a workplace wellness program only be shared with health care professionals would no longer apply.

The bill would also allow employers to impose financial penalties of up to 30 percent of the total cost the employee’s health insurance on employees who choose to keep such information private. According to the Kaiser Family Foundation, the average annual premium for employer-sponsored family health coverage in 2016 was $18,142. Thus, for such a plan, a wellness program could charge employees an extra $5,443 in annual premiums if they choose not to share their genetic and health information.

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

“While ASHG applauds efforts to improve employee wellness, employee protections against genetic discrimination established by GINA must not be sacrificed to achieve this,” said Dr. Cox. “Americans must be able to continue to volunteer for research and benefit from genetics-based clinical advances without fear of workplace discrimination based on its findings.”

References:

American Society of Human Genetics. (2017 March 5). ASHG letter to U.S. Committee on Education and the Workforce communicating its opposition to H.R.1313.

Kaiser Family Foundation. (2016 Sep 14). 2016 Employer Health Benefits Survey.

About the American Society of Human Genetics (ASHG)

Founded in 1948, the American Society of Human Genetics is the primary professional membership organization for human genetics specialists worldwide. Its nearly 8,000 members include researchers, academicians, clinicians, laboratory practice professionals, genetic counselors, nurses, and others with an interest in human genetics. The Society serves scientists, health professionals, and the public by providing forums to: (1) share research results through the ASHG Annual Meeting and in The American Journal of Human Genetics; (2) advance genetic research by advocating for research support; (3) educate current and future genetics professionals, health care providers, advocates, policymakers, educators, students, and the public about all aspects of human genetics; and (4) promote genetic services and support responsible social and scientific policies. For more information, visit: http://www.ashg.org.

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