Act Now or Forfeit Privacy for Genetic Data

There are lots of things you may not want to share with your employer: political leanings, religious affiliation, financial history. How about your DNA? A new bill making its way through the House of Representatives would allow employers to require genetic testing for employees—and to financially penalize those who don’t comply. This law would be a massive setback, stripping Americans of genetic nondiscrimination protections that took years to put in place.
In 2008, Congress passed the Genetic Information Nondiscrimination Act (GINA), which established federal rules to ensure that health insurance companies and employers could not treat people differently based on genetic data. The law protects someone who has, say, an increased risk of breast cancer due to a BRCA1 mutation from being refused insurance coverage or from having her rates jacked up. As more of us undergo genetic testing for one condition or another, the protections afforded by GINA are increasingly important.
So why the push to change things? This new bill, HR 1313, focuses on so-called wellness programs offered by employers, ostensibly to improve employee health but more practically to control corporate healthcare costs. At first blush, these wellness programs sound like a great deal: your employer offers lower insurance premiums for employees who participate in initiatives to get healthier, such as using fitness trackers or losing weight or quitting smoking. However, studies have shown these programs have little effect on employees’ health, while they have a major effect on shifting insurance costs from employers to employees, particularly those who don’t participate or aren’t healthy enough to earn discounts.
HR 1313 follows the same trend. The bill would allow companies to require genetic testing for employees in wellness programs, grant them access to the results, and financially punish employees who declined testing. (Technically, this is considered “voluntary” because employees can opt out, though that choice comes with a hefty fine.) The American Society of Human Genetics estimates that the average family could be charged more than $5,000 per year for refusing to undergo genetic testing in corporate wellness programs.
The idea that companies could demand genetic testing of their workers, and then be able to view those results (as well as related medical information) is appalling. There are laws upon laws protecting the privacy of health-related data in this country, and genetic information should have the same protection.
Regular Techonomy readers know that I’ve had my genome sequenced; since then, I have offered access to the data to just about anybody who asks. I believe that open sharing of genomic information will ultimately accelerate the science and lead to stronger, more reliable results for everyone else. But I also believe that sharing such data is a completely personal decision, and that each of us has the right to grant or deny access to that information as we wish. Especially now, when there is still so much we don’t know about what our DNA reveals, no company or institution should have the right to demand or access that data.
HR 1313 has already passed one committee and is being considered by two others. If you value your right to privacy, now is the time to contact your representative and make your voice heard.
For more detail on the HR 1313 bill, check out this coverage from STAT.