Sharing Your Genetic Information


A few years ago here at Diabetes Flashpoints, we wrote about[1] the Genetic Information Nondiscrimination Act (GINA) — a law signed by President George W. Bush in 2008. That law made it illegal for employers or health insurance providers to ask for, or discriminate based on, genetic information about employees or applicants. The law defined genetic information broadly to include not only specific genetic traits, but also your family history of health conditions.

Now, it appears that Congress may be taking steps to weaken the protections offered by GINA. As noted last week in an article[2] in The Washington Post, last Wednesday, the House of Representatives’ Committee on Education and the Workforce approved a bill that would make it legal for workplace wellness programs[3] to ask for genetic information from employees as a condition for participating. While workplace wellness programs are technically voluntary, employers are allowed to add a 30% surcharge to health insurance premiums of employees who don’t participate — which means that many people can’t afford not to participate in them.

What’s more, as a New York Times article on the proposed law[4] notes, the bill would allow employers to charge an extra 30% of the cost of an entire family’s premiums if an employee doesn’t participate, rather than 30% of just the employee’s share of the premiums, as is currently allowed. But most employers, the article notes, currently don’t penalize employees by as much as they legally could for lack of participation.

The bill still faces several hurdles before it can becomes law — including being considered by other committees in the House of Representatives, passing a vote by the full House, and being considered in the Senate. It passed last Wednesday’s committee vote by a margin of 22–17, with all Republicans voting in favor and all Democrats voting against it. The bill is opposed by a number of medical and advocacy groups, including the American Diabetes Association, AARP, the American Academy of Pediatrics, and the American Society of Human Genetics. It’s supported by the American Benefits Council, which represents major employers.

What do you think of this proposed law — would you be comfortable sharing genetic information, like your family medical history, with your employer as part of a wellness program? What about the results of specific genetic tests that can estimate your risk of developing conditions, like certain cancers? Should employees be allowed to opt out of providing certain information if they participate in a workplace wellness program? Should these programs be completely voluntary, with no penalty for not participating? Leave a comment below!

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