A little-noticed bill moving through Congress would allow companies to require employees to undergo genetic testing or risk paying a penalty of thousands of dollars, and would let employers see that genetic and other health information.
目前的法律，如2008反基因歧视法（通常被称为GINA），禁止雇主以遗传信息为依据进行雇佣、解聘、升职、加薪，或做出任何与雇佣行为有关的决定。然而，新法案提出，当收集基因健康信息成为职场健康计划（workplace wellness programs）的一部分时，以前的基因保护法案已经不适用了。
Giving employers such power is now prohibited by legislation including the 2008 genetic privacy and nondiscrimination law known as GINA. The new bill gets around that landmark law by stating explicitly that GINA and other protections do not apply when genetic tests are part of a ‘workplace wellness’ program.
职场健康计划，是在公司内开展的一套关于健康信息的“奖惩机制”，通过监控测评等方式来改善员工的健康。对于完成了健康风险评估的员工，将提供健康保险的补贴和奖励，对于未提供信息的人处以罚款。根据现行的“Affordable Care Act”，雇主可以为自愿参加健康计划的员工提供超过5折的医疗保险折扣。
The bill, HR 1313, was approved by a House committee on Wednesday, with all 22 Republicans supporting it and all 17 Democrats opposed. It has been overshadowed by the debate over the House GOP proposal to repeal and replace the Affordable Care Act, but the genetic testing bill is expected to be folded into a second ACA-related measure containing a grab-bag of provisions that do not affect federal spending, as the main bill does.
“该法案将完全取消现有法律的保护。” Jennifer Mathis，民权组织“心理健康法律中心”政策和法律倡导部主任说道。尤其是GINA对基因和健康信息的保护，以及1990年美国残疾人法都会受到重创。
“What this bill would do is completely take away the protections of existing laws,” said Jennifer Mathis, director 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 information in GINA and the 1990 Americans with Disabilities Act “would be pretty much eviscerated,” she said.
Employers say they need the changes because those two landmark laws are “not aligned in a consistent manner” with laws about workplace wellness programs, as an employer group said in congressional testimony last week.
Despite those wins, the business community chafed at what it saw as the last obstacles to unfettered implementation of wellness programs: the genetic information and the disabilities laws. Both measures, according to congressional testimony last week by the American Benefits Council, “put at risk the availability and effectiveness of workplace wellness programs,” depriving employees of benefits like “improved health and productivity.” The council represents Fortune 500 companies and other large employers that provide employee benefits. It did not immediately respond to questions about how lack of access to genetic information hampers wellness programs.
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.
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.
The privacy concerns also arise from how workplace wellness programs work. 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.
Published on: http://wcmi.us/genetictest