Can the boss see your genetic tests? GOP bill would fine you for not sharing

Call it creepy or maybe a too-early April Fool’s joke. What else can be said about a Republican-backed measure, advancing in the House of Representatives, that puts Big Brother in charge— big time —in many workplaces via so-called wellness programs?

It’s called the  “Preserving Employee Wellness Programs Act.” This Orwell-inspired bill,  pushed by North Carolina Republican Congresswoman Virginia Foxx, gives employers scary control over their workers. Employees who participate in job-related health programs can be compelled to undergo genetic tests, and to provide the results to employers, albeit in supposedly anonymized fashion. If they fail to do so, they could face thousands of dollars in fines.

Disclosure of extremely personal, private medical information has been barred by the 2008 Genetic Information Nondiscrimination Act, aka GINA. It arose partly after a 1998 court case, in which clerical and administrative workers were allowed to sue their employer for requiring testing for “highly private and sensitive medical genetic information such as syphilis, sickle cell trait, and pregnancy” without their consent or knowledge during a general employee health exam. GINA has been key in blocking employers from tapping into genetic and other confidential medical information as part of increasingly popular but largely ineffective workplace wellness programs. Because most Americans, more than 155 million of them, get their health insurance at work, many companies have launched and expanded such programs as way to reduce their coverage costs.

As Stat, the health information site, has reported:

Employers got virtually everything they wanted for their workplace wellness programs during the Obama administration. [Obamacare]  allowed them to charge employees 30 percent, and possibly 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 plans to get pregnant; and sometimes weight loss and smoking cessation classes. And in rules that Obama’s Equal Employment Opportunity Commission issued last year, a workplace wellness program counts as “voluntary” even if workers have to pay thousands of dollars more in premiums and deductibles if they don’t participate.

But companies have chafed at GINA restrictions, especially as genetic testing, including for “personalized” or targeted treatments for cancer and other diseases, has become more common and effective. Companies argue that data from genetic tests could help them better grapple with risks, costs, and needs when insuring workers.

Nancy Cox, president of the American Society of Human Genetics, wrote to the House Committee on Education and the Workforce before it approved the bill 22-17 on strict party lines (Republicans favoring, Democrats opposing) that HB1313 lets: “employers … ask employees invasive questions about … genetic tests they and their families have undergone” and “to impose stiff financial penalties on employees who choose to keep such information private, thus empowering employers to coerce their employees” into providing their genetic information.

She and other opponents say that it is too easy in small companies to determine from “anonymous” genetic data the identities of actual employees. In larger companies, outside consulting firms—largely unregulated— not only might administer tests but also could see data attached to employee names. They also might sell health information and might not be barred from doing so. The opponents to the bill include the American Diabetes Association, American Academy of Pediatrics, Epilepsy Foundation, March of Dimes, and AARP.

I’ve written how AARP, the nation’s largest group advocating for Americans older than 50, has sued federal regulators over workplace wellness programs. AARP says they are ineffective, intrusive, and discriminatory against older workers. The independent, nonpartisan researchers at the RAND Corporation have found the programs don’t work in saving money or improving workers’ health.

It’s ghastly that congressional Republican want to give companies greater leverage to invade their workers’ medical privacy. GOP lawmakers say HB1313 will be part of package of health care related measures that partisans hope to enact after the repeal and replacement of the Affordable Care Act.

But this bill is yet another legislative over-reach, akin to some other unnecessary, counterfactual measures I have written about. These proposals, among things, would strip patients of important protections to seek legal redress, justice, and vital economic support after they have been harmed while seeking medical services.

Voters may wish to exercise their democratic rights to let their elected representatives know how strongly they oppose Big Business getting to paw through their private medical information. It’s an abomination that a party that proclaims it wants to get the government off our backs thinks a great idea to let our bosses intrude into our doctors’ offices, hospitals, and medical testing labs. Creepy, yes. And no joke.