Lalmohan wrote:US is the world's best run police state.
Related to the above.
Sorry for the long content...important for Amrikhan residents...A new bill would allow employers to see your genetic information — unless you pay a fine
A new bill is quietly making its way through Congress that could bring the US a little closer to a Gattaca-like future in which employers could discriminate against their employees based on their genes and risk of disease.
To understand how we might get to Gattaca, let’s back up. Under Obamacare, employers are allowed to offer employees deep discounts on health insurance premiums if they participate in workplace wellness programs. The programs often involve medical questionnaires and health assessments — which has meant employers can get access to some of their employees personal health data.
Employers embraced the wellness programs. Insurers love them. The Obamacare incentives helped grow the giant workplace wellness industry. And the workplace wellness provisions in the law were some of the only parts of the ACA that received enthusiastic bipartisan support.
Now this new bill, HR 1313 — or the Preserving Employee Wellness Programs Act — seeks to clarify exactly how much personal health data employers can ask their employees to disclose. And in doing so, the bill also opens the door to employers requesting information from personal genetics tests or family medical histories.
As it turns out, employee wellness programs were already very intrusive of employees’ privacy. It also turns out they’re a bit of a sham and don’t work nearly as well as supporters might have hoped to make people healthier or bring down health care costs. But the new bill would allow employers to dig even deeper into participating employees’ personal health information. While employees wouldn’t be forced to join the programs or hand over their genetic test results, they’d have to pay hefty penalties for opting out.
There are four main ways HR 1313 would allow workplaces to access more of their employees’ personal and family health histories, and potentially use that information to discriminate against their workers:
1) First, the bill would kill legal challenges over whether workplace wellness programs are actually voluntary.
2) Second, the bill would allow employers to ask about an employee’s family medical history — or risk paying a surcharge.
3) Third, employers would be able to demand your personal genetic information — unless you pay a surcharge.
Under GINA, employers only have the right to access anonymized aggregate data about their employees’ health that’s collected as part of a wellness program. This was already controversial, since — in workplaces with a small number of employers — it might be easy for employers to tell which employee’s data they were looking at.
The new bill, once again, goes further: It says that if an employer runs a wellness program that complies with the ACA, then it’s okay to ask workers for their personal information. So this would mean employers could demand access to the results of genetic tests an employee might have undergone during pregnancy or to determine if she’s susceptible to breast cancer, for example.
This, too, is not mandatory per se — but if you refuse to give that information, you face that 30 percent surcharge. And again, there’s that pesky discrimination problem. “Employers aren't supposed to use sensitive information to discriminate,” Bagley said, “but the whole reason that statutes like the ADA and GINA keep that information from employers is because there's a risk that they may use it anyhow.” In a worst-case scenario, for example, they could drop an employee who is at a high risk of a costly genetic disorder.
4) Fourth, the bill transfers more regulatory power from an independent committee to federal agencies
Wellness programs by their nature intruded on employee privacy. In the programs’ health assessments, they probed into how many hours workers slept, what food and alcohol they ate and drank, and how much they exercised. That’s part of the reason they’ve been so controversial.
Many of the news stories on this bill suggest HR 1313 came out of thin air; it didn’t. It simply builds on Obamacare provisions by clarifying exactly how much employers can peer into their employees’ health histories and genetic information — and it empowers employers with even more oversight, leaving workers once again in the position of choosing between affordable health care and their privacy.
Employees in places with these wellness programs were already forced to make that choice; under HR 1313, they’ll simply have even more to worry about, like whether they want their employer to see the results of a genetics test they had during a pregnancy, or to know that their spouse or mother had cancer or depression.
As Stoltzfus Jost of Lee University summed up, “The bill expands or eliminates the employee protections that were pretty weak already.”
This is worrisome for anyone concerned with genetic discrimination, genetic privacy, or disability rights, which is why groups like the American Society of Human Genetics have opposed the bill.
Meanwhile, there’s actually no good evidence that these wellness programs actually do what they’re supposed to do — improve health and bring down health care costs — so employers’ fondness for the programs may be dissipating, Bagley added.
For now, HR 1313 has already been marked up by the House Education and the Workforce Committee, and it’s now up to House leadership to decide on when to vote on it. Hopefully lawmakers will pay attention to the privacy and discrimination issues and the lack of evidence for wellness programs as the bill moves through Congress.