Imagine if, as part of your workplace wellness program, your human resources department and your health insurance company could make you fork over some DNA. Besides using this DNA to predict your odds (with very limited accuracy) of getting diabetes or a heart attack in 20 years, imagine that your employer's insurance company has partnered with a foreign company that will store, use, and profit from information your DNA reveals.
Imagine no longer. This could be coming soon to your company, if you are one of the 23-million people insured by Aetna. Plus, if Aetna can make enough money selling its program to enough employers, other insurers might start demanding and re-selling employee DNA too.
The good is news is that your participation must be "voluntary." The bad news is thanks to the Business Roundtable's influence on Congress and pressure they placed on the White House, the current definition of "voluntary" -- a definition likely to be confirmed under proposed rules -- sounds a lot like the definition of "involuntary." Specifically, you can now be forced to "voluntarily" forfeit up to about $2000/year (through fines or lost incentives amounting to 30% of the total cost of your health insurance) for refusing to allow your employer to experiment with these programs on you.
"Experimenting with these programs" on you may seem like hyperbole, but that's the phrase used by Katherine Baicker, the Harvard professor whose precise but ill-considered claims of savings helped enshrine wellness in the Affordable Care Act (ACA). (By contrast, now that forced wellness is already etched into law, she admits: "There are very few studies [with] reliable data.")
While Aetna itself is not storing your DNA, the Aetna partner company actually collecting this information, a Canadian firm called Newtopia, says that your DNA will be safe with them in Ontario. "Safe" may be defined as "unsafe," though, because Newtopia's privacy policy, linked in their footer menu, is rather vague, listing only "some of" the ways they can re-use this data. Buried in the lengthy list is: "Research: we can collect, use and disclose your de-identified personal information to perform research into weight and lifestyle management." One could assume that, as a private company, they intend to profit from selling or publishing this information and research.
Newtopia's website doesn't disclose the possibility that your DNA might be mishandled by one of the eight specified groups of people (including "naturopathic doctors") or the unspecified "other persons" who can use your data "to take care of you." Yet despite admitting no possibility of errors, Newtopia's privacy policy does say they can use your DNA for "error management."
Leaving aside the unfairness of employers now being allowed to threaten you with fines to give up your DNA to someone to profit from it and manage errors with it, national privacy expert Anna Slomovic says "de-identified" DNA can and has been re-identified. Her blog on this topic recommends against letting a company "store" your DNA -- especially a company whose privacy policy doesn't list all the ways they can use your data or all the people who can access it.
This doesn't even begin to mention the possibility of wholesale data breaches. Sixty million Anthem policyholders were breached, a large wellness company called Staywell had a breach, and there have been 2.3 million reported instances of medical identify theft.
As if this all weren't concerning enough, Aetna's and Newtopia's other forays into wellness don't exactly inspire confidence.
In a collaboration with a couple of small drug companies, Aetna recently tried to convince companies to let its representatives pitch those companies' drugs directly to their obese employees. These weren't just any old drugs, but rather drugs whose claims to fame were their poor marketplace acceptance ("nothing short of a nightmare"), high promotional fees paid to physicians, and hazardous side effects, none of which Aetna's sales material disclosed.
Newtopia's website proclaims "SCIENCE DRIVES EVERYTHING WE DO." Yet it features a "scientific" statement that any fifth-grader can see is made up: "Companies that promote health are three times more productive than those that don't." So if Walmart used Newtopia's genetic testing, would their cashiers ring up three times more customers? Could doctors see three times more patients? Could pilots fly planes three times faster? Would customer service "hold" messages tell us our calls are three times more important to them?
Unlikely. And if we can't trust Newtopia to interpret fifth-grade science, why should we trust them to interpret our DNA?
You shouldn't, according to Mayo Clinic endocrinologist Dr. Michael Jenson. He told the Associated Press that genetic testing can predict only about 5% of risk, which may be why Aetna doesn't cover routine genetic screening if done by your doctor without allowing Newtopia near your DNA. Besides, what good is knowing the answer? If you have a "positive" genetic test, you might be advised to lose weight and exercise, whereas absent the test, your best advice is to lose weight and exercise.
While that might seem like sound healthcare advice,"advice" joins "voluntary" and "safe" on the list of words that the dystopian world of wellness defines the opposite of what we'd assume. Newtopia itself insists that healthcare advice "does not constitute...healthcare advice." Oh, yes, and "taking care of you" does not mean taking care of you.
If all this sounds like a bunch of Orwellian doublespeak to justify a shocking degree of intrusion into employees' lives with no benefit, that's because it is. Even Aetna arguably thinks so. They collaborated on a report, co-authored with 27 other companies with a stake in the highly profitable workplace wellness industry, conceding wellness to be a money-losing idea even for employers who don't spend an extra $500 to analyze employee DNA.
Absent any economic value of wellness itself, the point of the heavy-handed politics of "voluntary" wellness may be to allow employers to levy fines against non-compliant employees. One vendor even brags about doing this, and the Business Roundtable has consistently lobbied for more ability to do fine employees, or as they say, "empower" them. Once again, there is a definitional disconnect: The Business Roundtable functionally if not literally defines "empower" as "reduce mandatory minimum employer insurance contributions and instead require employees to submit to programs like this one to have any hope of enjoying a decent insurance benefit."
Maybe despite all this, Aetna could at least say its program works. No such luck. Alas, even the customer Aetna gave to the Associated Press to profile, Jackson Laboratory, isn't exactly thrilled with the program. Among other things, most of the employees they invited into the program declined. Another third initially participated but dropped out. Curiously, Newtopia's website nonetheless claims that 92 percent of Jackson's participants succeeded. Perhaps their fifth-grade science teacher also taught math.
Jackson's spokesperson also voiced concern about Aetna's $500/employee price tag. He told the Associated Press Jackson might drop the program after another year.
Sure that's the experience of just one company, and what do they know about the benefits of genetic testing? Plenty, as it turns out -- Jackson's website says it is a "leading genetic research laboratory." If a genetics organization passes on a program featuring genetics, perhaps the rest of us should pass too.
Finally, let's end on some good news. The law only allows your employers to conduct "voluntary" genetic analyses only if these exams and experiments have "business necessity."
The latter language may offer a way to recoup these $2000 fines, not just for DNA-based programs but for perhaps any wellness programs, by arguing this point to the Equal Opportunity Employment Commission. Since these programs show no demonstrable effect on health (the answer is always to eat better and exercise more regardless of your genes), it is hard to imagine any "business necessity" in your employer deciding to "experiment on" you. Employers don't just lose money, according to the publication that Aetna collaborated on. These programs also damage morale, and harm corporate reputations. Those two additional drawbacks are also listed in that very same publication. In other words, that's what Aetna itself says.
What the rest of us would say can't be printed in a family publication like Huffington Post.
Note: Both Newtopia and Aetna were offered the opportunity to review/comment on/rebut/correct earlier drafts of this article. Aside from a mysterious call from an Aetna functionary demanding my mailing address, no response was offered.