The bill has slipped by without much notice.
A little-noticed bill moving through Congress would allow companies to require employees to undergo genetic testing or danger paying a penalty of thousands of dollars, and would let employers see that genetic and other health information.
Giving employers such power is now prohibited by legislation including the 2008 genetic privacy and nondiscrimination statute known as GINA. The new bill gets around that landmark statute by stating explicitly that GINA and other protections do not applies when genetic tests are part of a workplace wellness program.
The bill, HR 1313, was approved by a House committee on Wednesday, with all 22 Republicans supporting it and all 17 Democrat resisted. It has been overshadowed by the debate over the House GOP proposal to repeal and supplant the Affordable Care Act, but the genetic testing bill will likely be folded into two seconds AC-Arelated measure containing a grab-bag of provisions that do not affect federal spending, as the main bill does.
What this bill would do is completely take away the protections of existing laws, told Jennifer Mathis, administrator of policy and legal advocacy at the Bazelon Center for Mental Health Law, a civil rights group. In particular, privacy and other protections for genetic and health info in GINA and the 1990 Americans with Disability Act would be pretty much eviscerated, she said.
Employers say they need the changes because those two landmark statutes are not aligned in a consistent style with statutes about workplace wellness programs, as an employer group said in congressional evidence last week.
Employers get virtually everything they wanted for their workplace wellness programs during the Obama administration. The ACA allowed them to charge employees 30 percent, and perhaps 50 percent, more for health insurance if they declined to participate in the voluntary programs, which typically include cholesterol and other screenings; health questionnaires that ask about personal habits, including has the intention to was pregnant; and sometimes weight loss and smoking cessation class. And in rules that Obamas Equal Employment Opportunity Commission issued last year, a workplace wellness program counts as voluntary even if employees have to pay thousands of dollars more in premiums and deductibles if they dont participate.
Despite those wins, the business community chafed at what it discover as the last obstacles to unfettered implementation of wellness programs: the genetic information materials and the disabilities statutes. Both measurements, according to congressional evidence last week by the American Benefits Council, set at risk the availability and effectiveness of workplace wellness programs, depriving employees of benefits like improved health and productivity. The assembly represents Fortune 500 companies and other major employers that render employee benefits. It did not immediately respond to questions about how deficiency of access to genetic info hampers wellness programs.
Rigorous investigates by researchers not tied to the$ 8 billion wellness industry have shown that the programs improve employee health little if at all. An industry group recently concluded that they save so little on medical costs that, on average, the programs lose money. But employers continue to embrace them, partly as a style to change more health care costs to workers, including by penalizing them financially.
The 2008 genetic statute prohibits a group health plan the kind employers have from asking, let alone require, someone to undergo a genetic exam. It also prohibits that specifically for underwriting intents, which is where wellness programs come in. Underwriting intents includes basing insurance deductibles, rebates, rewards, or other financial incentives on completing a health assessment of risks or health screenings. In addition, any genetic info can be provided to the employer simply in a de-identified, aggregated kind, rather than in a way that exposes which man has which genetic profile.
There is a big exception, however: As long as employers construct providing genetic info voluntary, they can ask employees for it. Under the House bill , none of the protections for health and genetic information supplied by GINA or the disabilities statute would apply to workplace wellness programs as long as they complied with the ACAs very limited the resource requirements for the programs. As a make, employers could demand that employees undergo genetic testing and health screenings.
While the information returned to employers would not include employees epithets, its not difficult, particularly in a small company, to match a genetic profile with the individual.
That would undermine basically the privacy provisions of those statutes, told Nancy Cox, chairman of the American Society of Human Genetics, in a letter to the House Committee on Education and the Workforce the day before it approved the bill. It would allow employers to ask employees invasive questions about genetic tests they and their families have undergone and to enforce stiff financial penalties on employees who choose to keep such info private, thus empowering employers to compel their employees into providing their genetic information.
If an employer has a wellness program but does not patron health insurance, rather than increasing insurance premiums, the employer could dock the paychecks of workers who dont participate.
The privacy fears also arise from how workplace wellness programs run. Employers, specially large ones, generally hire outside companies to run them. These companies are largely unregulated, and they are allowed to see genetic exam makes with employee names.
They sometimes sell the health info they compile from employees. As a make, employees get unexpected pitchings for everything from weight-loss programs to running shoes, thanks to countless strangers poring over their health and genetic information.