A lab technician handles a sample of DNA at the Genetic Institute Nantes-Atlantique (IGNA) on December 10, 2015 in Nantes, western France. IGNA is one of the first French laboratories of forensic expertise to use DNA evidence to establish the physical characteristics of a suspect. (Credit: GEORGES GOBET/AFP/Getty Images)
Amid a recent deluge of human-rights concerns and big steps for Big Business, a bill is humbly working its way through Congress that would let employers compel their workers to either provide intimate genetic data or face thousands in penalties.
HR 1313, or the Preserving Employee Wellness Programs Act (PEWPA), could expand companies’ ability to acquire genetic and other health information from employees via their DNA through a loophole in extant privacy law known as the Genetic Information Nondiscrimination Act (GINA). According to the near-annoyingly smart and reliable, nonprofit PBS, PEWPA threatens to side-step privacy protections established under GINA and elsewhere by stating specifically that genetic tests required as part of a “workplace wellness” program aren’t entitled to such protections.
As with other ‘voluntary’ provisions of health info under workplace wellness programs, employees could face paying thousands of dollars in care-related costs if they refuse to share DNA for inclusion in company-managed, somewhat individualized wellness schemes meant to bring health costs down. If they choose instead to provide samples for DNA testing, PBS notes, employees would open themselves up to invasive medical scrutiny that could easily extend to their relatives, potentially putting whole families at risk for discrimination.
Introduced by Virginia Representative Virginia Foxx (R-NC), chairwoman of the House Committee on Education and the Workforce, the bill was already approved by a Republican-dominated House committee last week, and 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,” according to PBS.
Ethan Hawke, as a genetic ‘inferior’ who has assumed another man’s more impressive DNA profile, shows distress under his employer’s oversight in this “GATTACA” film still. (Credit: Columbia Pictures Corporation, 1997)
Geneticist Ricki Lewis explained for PLOS’ DNA Science Blog that the potentially side-stepped GINA law refers to an earlier court ruling on employer use of worker DNA, whereby administrative staff at a major research lab were able to sue their employer for testing specimens from a general health exam, without workers’ consent, for “highly private and sensitive medical genetic information such as syphilis, sickle cell trait, and pregnancy.” Dr. Lewis noted, “I’m not sure how syphilis and pregnancy got lumped in with sickle cell trait (a carrier), but requiring any such test is considered an illegal search under the Fourth Amendment, [and the] sickle cell request also violates Title VII of the Civil Rights Act by singling out employees of African ancestry.”
FOX News reported this weekend that the bill, which would “reportedly make it easier for employers gain access to genetic information about their employees and their families,” is already seeing push-back from House Democrats and a range of privacy advocates, too. Jennifer Mathis, director of policy and legal advocacy at the Bazelon Center for Mental Health Law, told PBS that privacy protections on genetic info established by GINA and by the 1990 Americans with Disabilities Act (ADA) “would be pretty much eviscerated,” for one.
Sandra Park, a senior attorney with the ACLU Women’s Rights Project who’s worked on genetic privacy cases, also expressed key concerns over the bill’s potential impact, and emphasized that any legislation allowing employers to “coerce genetic testing of their employees” sets the latter up for invasive and discriminatory treatment. “It will open the door to discrimination, as employers may decide to act against employees based on the information they obtain or against those who choose to keep their information confidential,” she commented by email. She continued,
The decision to obtain genetic testing is a highly personal one, [and at] a time when more patients are obtaining genetic testing and contributing their data to research, we should be putting in place policies that strengthen patients’ privacy, by extending GINA to life insurance, disability insurance, and long-term care insurance, [rather than] eroding the privacy protections we have in place.
As STAT News reports, various medically focused parties have also expressed concern over HR 1313, including the AARP, American Society of Human Genetics, and even new Health and Human Services Secretary Tom Price. “I’m not familiar with the bill, but it sounds like there would be some significant concerns about it,” he told NBC’s Meet the Press. “If the department’s asked to evaluate it, or if it’s coming through the department, we’ll be glad to take a look at it.”
PLOS explained, too, that giving employers unfettered access to genetic information could lead to discrimination and assumption based on risk factors in their DNA—not actual diagnoses. “Single-gene diseases are unlike other health conditions or clinical findings, such as infections or high serum cholesterol readings, because a diagnosis in one person reveals risks to relatives in accordance with Mendel’s laws,” the site noted. “A 24-year-old school bus driver in perfect health, for example, whose parent receives a diagnosis of Huntington’s disease, could under the new bill face queries from an employer or health insurer about the 50% risk.
At present, GINA also establishes that only patients, their health care providers, and board-certified genetic counselors can review the results of employee DNA testing. With PEWDA’s reworking of these protections, however, critics fear that employers may soon be able to look well past applicant resumes—and deep into individual and family medical history and potential futures—when making hiring and firing decisions.
Jude Law, as a participant in DNA-based deception, prepares samples of his superior genetic material for use by his collaborator in this “GATTACA” film still. (Credit: Columbia Pictures Corporation, 1997)
PBS notes that proponents of the bill, such as the Fortune 500-led American Benefits Council, argue that PEWPA would reign in privacy protections from GINA and the ADA that “risk the availability and effectiveness of workplace wellness programs” to better employees’ lives with things like “improved health and productivity” (though it did not immediately specify exactly how, according to PBS). As part of workplace wellness programs established under President Obama, employers have already been able to charge employees 30% to 50% more for health insurance if they didn’t participate in surveys and tests related to smoking, cholesterol, pregnancy plans, and other medical details—including, potentially, medical details of their spouses.
At the same time, PBS points out, “Rigorous studies by researchers not tied to the $8 billion wellness industry have shown that the programs improve employee health little if at all.” One industry group recently found that workplace wellness programs actually lose money on average, despite their stated intentions to lower medical costs and the extra thousands workers provide for non-participation.
Nevertheless, PBS reflects, “employers continue to embrace them, partly as a way to shift more health care costs to workers, including by penalizing them financially.”