In the sci-fi thriller Gattaca, Ethan Hawke struggles to compete in life and work as a biologically inferior human born without the aid of genetic selection. In Gattaca's vision of the future, selectively breeding desirable traits into humans is common. And while genetic discrimination is technically illegal, genetic profiling is still used for things like identifying the most qualified job applicants, resulting in a two-tiered society of genetic haves and have-nots.
Image: Columbia Pictures
Now, legislation making the rounds through Congress is raising concerns that the future might be rife with the same sort of genetic inequalities explored in Gattaca. If only it, too, were science fiction.
When Gattaca premiered in 1997, it was right as in vitro fertilisation was taking off. Doctors were beginning to practice techniques like preimplantation genetic diagnosis, examining embryos for debilitating diseases before implanting them in a mother-to-be's womb. Practices like this stoked fears about designer babies. Today, though, the threat of discriminating based on genetics is much more immediate. You don't need to design the perfect human in a test tube to give someone an unfair disadvantage based on their genes.
Millions of people have used services like 23andMe and Ancestry.com to test their genetics, revealing information about their family lineage as well as personality traits and health risks. Newer services, like Helix, are beginning to offer even more complete pictures of a person's genetic makeup at increasingly affordable prices. In the US, the law stops an insurer or employer from accessing that information and deciding not to cover or hire someone because their DNA indicates a high risk for cancer. But right now, the genetic privacy that laws protect is under threat.
In 2008, US Congress passed the Genetic Information and Nondiscrimination Act, known as GINA, to specifically prohibit health insurers and employers from either requiring genetic testing or using it in making decisions about things like deductibles. In both the House and the Senate, it passed with only one dissenter, Congressman Ron Paul. The late Senator Ted Kennedy called it the "first major new civil rights bill of the new century".
This year, an under-the-radar bill that sought to undermine protections against genetic discrimination began making its way through the House. The bill, HR1313, would allow employers to request that employees undergo genetic testing, with the risk of paying hefty fines if they refuse. It would also give employers access to that data, along with other health information. And it allows for all this without violating GINA or the Americans with Disabilities Act, by crafting a loophole that says those protections do not apply with the tests happen under the guise of so-called "workplace wellness" programs.
After passing the House Committee on Education and the Workforce last week, with all 22 Republicans supporting it and all 17 Democrats opposed, the bill is still under review by two other House committees. It has attracted a torrent of criticism. A letter sent to the education and workforce committee earlier this week, signed by nearly 70 organisations including the American Academy of Pediatrics, the AARP, and the National Women's Law Center, said the legislation would "overturn" essential employee protections. Geneticists have expressed their worries about how employers might misuse the information. Even US Secretary of Health and Human Services Tom Price suggested it raised "significant concerns".
GINA has one notable exception in barring employers from accessing their employees' genetic data. It allows employers to request the information so long as it is provided in a de-identified, aggregated form and is "voluntary" — for instance, in employee wellness programs. Wellness programs are popular with employers, and often include features like offering insurance discounts for completing health-risk assessments, or penalising employees who smoke. Under the Affordable Care Act, employers are allowed to discount health insurance premiums by up to 30 per cent for employees who voluntarily participate.
But some businesses have argued that rules under GINA and the ADA make wellness programs burdensome — they suggest that without the full picture of an individual employee's health, it's difficult to sustain the programs. A House committee statement said the new bill provides employers "the legal certainty they need to offer employee wellness plans, helping to promote a healthy workforce and lower health care costs". The new bill is even dubbed the "Preserving Employee Wellness Programs Act".
Actions taken under Obama administration had already laid the groundwork for this serious attack on privacy. A rule issued by the Equal Employment Opportunity Commission last year said that wellness programs count as "voluntary" even when workers are forced to pay thousands of dollars more for insurance — really, a penalty — when they don't participate. Last spring, the AARP sued over the ruling, arguing that the wellness programs violated anti-discrimination laws meant to protect workers' medical information. That the programs were "voluntary", they argued, was merely a pretense.
The proposed legislation does away the provision that the data must be anonymised, further jeopardising any practical assumption of privacy. It also ups the maximum discounts employers can offer employees who participate in a wellness program from 30 per cent to 50 per cent. If passed as is, employees who fail to disclose information from genetic tests or medical histories for them, their spouses or children could face paying significantly more. In essence, this bill asks employees to chose between cheaper healthcare and privacy.
The EEOC has before sued employers accused of imposing penalties on workers who refused to join their wellness programs, but its hard not to view forgoing such a steep discount as a penalty for non-compliance. As one letter to lawmakers put it: "Allowing penalties of this magnitude would clearly allow employers to coerce employees into revealing their private genetic information."
(Wellness programs, its worth noting, have meanwhile been shown to be not very effective at all.)
It doesn't take much of an imagination to see how this information could be abused. While, like in Gattaca, genetic discrimination would still be technically illegal, an employer could in theory factor genetic information into decisions about things like promotions, without any real mechanism to hold them accountable for doing so.
The truth is, America's genetic privacy protections were already not nearly strong enough, even before this disturbing new legislation was on the table. Obama-era provisions already allowed employers to ask for genetic data collected via voluntary wellness programs, and although that data was legally required to be anonymised, in smaller workplaces it might not be very hard to figure out which data belonged to whom. And the protections of GINA do not apply to life insurance, long-term care, or disability insurance, meaning such companies are free to ask for genetic information and reject anyone deemed too risky.
In 2012, Georgetown law professor Paul Ohm coined the phrase "database of ruin", arguing that among the trails of data that we all leave online, everyone has at least one lethal secret.
"This might be a secret about a medical condition, family history, or personal preference," he wrote. "It is a secret that, if revealed, would cause more than embarrassment or shame; it would lead to serious, concrete, devastating harm."
Embedded in our DNA are the secrets of our health, our life, our personalities. Let's not turn them into a database of ruin.