NBC News: Nobody's business — 5 things to know about genetic testing.
HR 1313 lets employers who don't provide health insurance dock your pay unless you participate in a"wellness program" (for which your employer can charge you) and the program might compel you to submit to genetic testing, the results of which can be sold to marketeers. If the company offers health insurance, it can charge you up to 50% more if you don't "voluntarily" participate in its wellness program. Such programs are frequently administered by third parties who are virtually unregulated.
No Democrat on the House Education and Workforce Committee voted for this outrage but every GOP rep. (below) did:
Foxx, NC; Wilson, SC; Hunter, CA; Roe, TN; Thompson, PA; Walberg, MI; Guthrie, KY; Rokita, IN; Barletta, PA; Messer, IN; Byrne, AL; Brat, VA; Grothman, WI; Russell, OK; Stefanik, NY; Allen, GA; Lewis, MN; Rooney, FL; Mitchell, MI; Garrett, Jr., VA;
Smucker, PA; Ferguson, GA
From Sharon Begley, writing for StatNews.com
Rigorous studies 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 way to shift more health care costs to workers, including by penalizing them financially.Genetic testing is not an exact science and such labs are largely unregulated.
...Under the House bill, none of the protections for health and genetic information provided by GINA or the disabilities law would apply to workplace wellness programs as long as they complied with the ACA’s very limited requirements for the programs. As a result, employers could demand that employees undergo genetic testing and health screenings.
...While the information returned to employers would not include workers’ names, it’s not difficult, especially in a small company, to match a genetic profile with the individual.
That “would undermine fundamentally the privacy provisions” of those laws,” said Nancy Cox, president 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 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.
...If an employer has a wellness program but does not sponsor health insurance, rather than increasing insurance premiums, the employer could dock the paychecks of workers who don’t participate.
...Employers, especially large ones, generally hire outside companies to run them. These companies are largely unregulated, and they are allowed to see genetic test results with employee names.
They sometimes sell the health information they collect from employees. As a result, employees get unexpected pitches for everything from weight-loss programs to running shoes, thanks to countless strangers poring over their health and genetic information.
In one quality test, researchers gave genetic variants related to nine common conditions to nine labs. The labs disagreed 22 percent of the time, meaning one thought a genetic variant was a problem and another did not, said geneticist Heidi Rehm of Brigham and Women’s Hospital, who helped lead the study.