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Martin Dyckman: Genetic testing bill gives bosses power they shouldn’t have

in Statewide/Top Headlines by

Some perfectly objective news stories virtually write their own editorials. Here is the top of a recent one from the PBS NewsHour:

“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.

“Giving employers such power is now prohibited by legislation including the 2008 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.”

That summary overstates, but only slightly. Employers already are entitled to other types of personal health information from workers who take part voluntarily in workplace wellness programs. And they’re allowed to discount health insurance premiums to those who do. This means, of course, higher premiums for those who don’t. In other words, there can be a penalty for saying no.

If this legislation (H.R. 1313) passes, workers could be compelled to undergo genetic testing, the results to be shared with their bosses, or pay that penalty for refusing. Whether it would amount to “thousands of dollars,” as the story said, is unclear.

This development is as sinister, if not more so, than anything George Orwell imagined on the part of the fictional dictator Big Brother.

Let’s not forget that government, from the White House to the courthouse, is usually the biggest employer around.

The House Committee on Education and Workforce approved the bill on a 22-17 party-line vote. Freshman Rep. Francis Rooney, R-Naples, was one of the 22.

I asked his press office why Rooney would support something like that. Spokesman Chris Berardi replied in an email that wellness programs “are a popular way to lower health insurance premiums for workers” and that 61 percent of all employers offer them.

They are “completely voluntary, and will remain that way under H.R. 1313,” he said. He claimed that opponents “have no evidence” to argue that non-participants pay more for health insurance.” Those who oppose 1313, he said, “are spreading false information in a desperate attempt to deny employees the choice to participate in a voluntary program that can reduce health insurance costs and encourage healthy lifestyle choices.”

That defense strikes me as weak if not disingenuous. At the least, it begs three questions, the largest of which is whether people who now participate “voluntarily” will still want to do so once employers have the power to snoop into their DNA.

Another question is whether 1313 opponents are trying to deny anything but the power of employers to go where they shouldn’t go.

The third is how much more money would be charged to people who refuse to participate in wellness programs that would make their DNA as accessible to their employers as their home addresses and telephone numbers.

Now, what is wrong in principle with opening that door to your benevolent employer? Especially when the DNA can tell only that you have a higher risk of some disease, not that you will actually develop it?

Here’s why. If I’m considering several employees for a long-term investment in expensive training that would make any of them essential to the company’s future, knowing that one is at higher risk of, say, breast or ovarian cancer might just make a difference.

Or if I need to trim my workforce, it would be useful to know which employees have a higher statistical risk of expensive diseases — or of bearing children with such costly genetic disorders as cystic fibrosis.

Genetic information can be enormously useful in preventive medicine. GINA, the 2008 law, allows for that. It provides for limited exceptions.

But the misuse to which such data could be put is illustrated by what the law flatly prohibits. It is an unlawful practice “to fail or refuse to hire, or to discharge, any employee, or otherwise to discriminate against any employee” because of genetic information, or “to limit, segregate or classify the employees … in any way that would deprive or tend to deprive any employee of employment opportunities or otherwise adversely affect the status of the employee as an employee …”

H.R. 1313 does not expressly repeal that. But once employers have access to potentially compromising DNA information, it would be easy to use it in the prohibited ways. Who would know?

In a typical Washington example of calling black white and wrong right, H.R. 1313 is named the “Preserving Employee Wellness Programs Act.”

According to NPR, 1313 caters to the wish list of the American Benefits Council, a lobby representing Fortune 500 companies and other large employers. Its present chairperson, Allison R. Klausner, represents large employers such as IBM, United Healthcare and AT&T.

In congressional testimony, it claimed that lack of genetic information puts wellness programs “at risk” and deprives employees of benefits like “improved health and productivity.”

That’s nonsense. The law already allows employees to share genetic information with health professionals and board-certified counselors.

The word “productivity” is the likely clue to what that this employer lobby actually cares about.

The more that people hear about H.R. 1313, the more they should hate it and the less likely it would pass on its own merits, or lack of them. The strategy, apparently, is to fold it into the overall Ryan-Trump health care scheme.

That would be yet another reason, not that any more are needed, to trash the whole atrocious mess.


Martin Dyckman is a retired associate editor of the Tampa Bay Times. He lives in Asheville, North Carolina.

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