Hot on the heels of Senator Schumer raising undue alarm about the privacy protections at the genetic genealogy testing companies, a real threat has reemerged in the United States: House Resolution 1313.
The threat is not from the testing companies, however; it’s from your boss. H.R.1313, euphemistically called the “Preserving Employee Wellness Programs Act”, would allow unregulated programs run through your employer to collect your genetic information and that of your family. H.R.1313 would weaken the privacy protections we are guaranteed by the Genetic Information Non-Discrimination Act of 2008 (GINA for short).
What the Bill Says
Here is the official summary of the bill:
This bill exempts workplace wellness programs from: (1) limitations under the Americans with Disabilities Act of 1990 on medical examinations and inquiries of employees, (2) the prohibition on collecting genetic information in connection with issuing health insurance, and (3) limitations under the Genetic Information Nondiscrimination Act of 2008 on collecting the genetic information of employees or family members of employees. This exemption applies to workplace wellness programs that comply with limits on rewards for employees participating in the program.
Workplace wellness programs may provide for more favorable treatment of individuals with adverse health factors, such as a disability.
Collection of information about a disease or disorder of a family member as part of a workplace wellness program is not an unlawful acquisition of genetic information about another family member.
What the Bill Means
If you want to know what this means and why you should be alarmed, I recommend that you read Judy Russell’s excellent overview of the bill. Here’s a key quote:
The proposed bill, H.R. 1313, allows employers to penalize employees who don’t fully participate in the wellness plans up to 50% of the costs of employer-provided insurance. And to fully participate an employee has to hand over the kind of information that GINA has said can’t be required, can’t be used, can’t be considered by an employer.
That includes results of DNA tests by the employee… and information and results of tests by family members. None of which can be required or even requested now.
Now, in theory, wellness plans are voluntary. No employee has to participate. But when an employer can charge an employee up to half of the cost of insurance if the employee doesn’t go along, the notion of voluntariness pretty much goes out the window.
So, what’s changed?
The bill has been lingering in various committees in the House of Representatives since it was introduced in March. It passed the Committee on Education and the Workforce back in the spring, but it’s been stagnating in the committees on Ways and Means and on Energy and Commerce since then.
On 11 December 2017, both committees “discharged” the bill, meaning that they released it to be considered by the full House of Representatives without voting on it themselves. The bill is now on the House schedule to be considered for passage.
It’s Time for Action!
If you oppose this bill — and you should — you need to let your Representative know. I wrote about how to contact your Representative back in March, along with a sample script to help you call or write them. It’s okay to contact them by more than one means, and it’s okay to do it daily. Especially if your Representative does not immediately voice opposition to the bill.
Let’s do this!