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US House Committee challenges workers' genetic privacy

13 March 2017

By Jennifer Willows

Appeared in BioNews 892

A bill currently passing through the US House of Representatives may mean that employees will have to share their genetic information with their employers.

The House of Representatives Committee on Education and the Workforce approved Bill HR1313 on 8 March, although it must pass other committees and the Senate before it becomes law.

A coalition of nearly 70 organisations including the American Society of Human Genetics (ASHG) opposed the bill, saying in a letter: 'We strongly oppose any legislation that would allow employers to inquire about employees' private genetic information or medical information unrelated to their ability to do their jobs, and to impose draconian penalties on employees who choose to keep that information private.'

In US law it is illegal for employers to demand genetic test results from workers under the 2008 Genetic Privacy and Nondiscrimination Act (GINA) and the Americans with Disabilities Act (ADA). Bill HR1313 sidesteps these restrictions by allowing genetic information to be gathered as part of 'workplace wellness' programmes. Participation in such programmes is considered voluntary, even if non-participation leads to financial disadvantage, ruled the Equal Employment Opportunities Commission in May 2016.

The bill would allow employers to pass on up to 30 percent of the total cost the employee's health insurance to employees who choose not to participate in a wellness programme. For an average family that could be an extra $5443 per year (based on the the Kaiser Family Foundation's figure of $18,142 for employer-sponsored family health cover in 2016).

'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.'

The American Benefits Council, which represents many large employers, claimed that the restrictions imposed by GINA and ADA 'put at risk the availability and effectiveness of workplace wellness programs,' depriving employees of benefits like 'improved health and productivity.'

The bill comes just as the Canadian Parliament is considering legislation to protect workers from workers from genetic discrimination (also reported in BioNews 892).

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