Hello, Big Brother

You Have the Alzheimer’s Gene? GOP Wants Your Boss to Know

Republicans derided Obamacare as the nanny state. But if this GOP bill on genetic testing passes, we’ll be living in the Orwell state.

03.20.17 1:00 AM ET

The health and wellness programs that proliferated under Obamacare as a way to help people quit smoking, start exercising, and develop healthy habits, could take a disturbingly intrusive turn under a Republican bill that would require employees to undergo genetic testing to see what diseases you carry in your genes—and allow employers to see the results—or face a financial penalty.

If Obamacare is nanny state, the GOP bill, “Preserving Employer Wellness Programs,” is Big Brother, potentially sanctioning an alarming misuse of medical information. There are not that many identifiable genetic markers yet, but there will be more in the future. If you carry the breast cancer gene, or the one for cystic fibrosis or Alzheimer’s, how would you feel about sharing that information with an employer?

The legislation, H.R. 1313, is a notable departure from traditional Republican thinking about privacy, reflecting instead the GOP’s intent to purge regulations that might in their view impede sound business decisions.

Only 5 percent of employers attach penalties to wellness plans if workers fail to meet goals or choose not to participate, says Jennifer Mathis, director of policy and legal advocacy at the Bazelon Center for Mental Health Law. “But there is increased interest among employers to do that (impose penalties) because they’re so desperate to reduce health care costs—and that’s what this is about—it’s testing the waters,” Mathis says.

Sponsored by North Carolina Republican Virginia Foxx, who chairs the House Education and the Workforce Committee, the bill has the backing of the Business Roundtable and the Chamber of Commerce, while the AARP (American Association of Retired Persons) and an array of worker groups are opposed.

Foxx’s office referred me to the committee’s spokeswoman, who did not respond to my interview request. But this is what she told CNBC: “Those who are opposed to the bill 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. We believe families should be empowered with that choice, and so did the Obama administration. It is another sad reminder of just how extreme the Democrat Party and their liberal allies are becoming.”

It’s true that Obamacare opened the door wider for these programs. The ACA allows employers to charge workers 30 to 50 percent more for health insurance if they do not participate in a wellness program. Employees get bonuses for participating or meeting their goals. These programs can include medical screening that involves a blood test for diabetes and a blood pressure test—but not for a genetic test, which carries untold implications for discrimination.

The GOP bill would override privacy protections in a 2008 federal law, the Genetic Information Nondiscrimination Act (GINA), which prevents employers from mandating genetic testing unless it’s part of a wellness program, and participation is voluntary. It also challenges protections implicit in the Affordable Care Act and the Americans with Disabilities Act.

Health and wellness programs have an almost cult-like following in the business community. Despite a number of studies, including one by the RAND Corporation, showing they don’t cut costs significantly, or deliver meaningful changes in employee health, there is enough positive data to suggest they are the wave of the future.

A constituent of Congresswoman Foxx who blogs under the name “Caffeinated Rage” and identifies himself as a public school teacher with a special needs child, suggests that before Foxx presses this bill any further, she and others who support the bill should be willing to submit themselves to a genetic test. “Maybe, we would then discover the very gene that predisposes one to obey the influence of large insurance company lobbyists rather than the very people that person is supposed to serve,” he writes.

Jennifer Mathis with the Bazelon Center said she wouldn’t be surprised if “Preserving Health and Wellness Programs” passed the House, but she was “skeptical” there are 60 votes in the Senate assuming the Democrats don’t forfeit the filibuster in the upcoming fight over the Supreme Court nomination of Judge Neil Gorsuch.

Senate hearings get underway this week. Vice President Mike Pence has vowed that Gorsuch will win confirmation “one way or the other,” a clear warning that Republicans are prepared to change longstanding rules requiring a super majority to a simple majority to get what they want. It’s called “going nuclear,” and for good reason. The fallout would be a significant loss of power for the minority, and a blank check for the majority and its biggest backers.