When George Orwell wrote 1984, it never occurred to him that Big Brother would be in the private sector. But he was covered by the UK’s National Health Service, not Aetna, so he had no way of predicting what has just happened.
George Orwell’s problem was that he never met Aetna’s Mark Bertollini, who’s promoting another similar Dr.Aetna-Will-See-You-Now concept: employer-based genetic testing to predict diabetes and heart disease.
By way of background, you may remember Aetna’s previous brainstorm, roughly translated as: “Let’s ferret out obese employees at other people’s companies (not our own) and pitch them two drugs that probably never should be been approved by the FDA in the first place, and tell employers that productivity will go up even though the FDA insert says productivity will decline.” That program turns out to be only Aetna’s first step in what is turning into the most intrusive jihad in the insurance industry. Next up is this genetic testing tool, where for about $500 extra, Aetna can possibly predict what might happen down the road to some employees.
This tool could be coming soon to a workplace near you, thanks to a new loophole: While the EEOC forbids use of genetic information in hiring, firing or other employment decisions, the law does not prevent employers and their vendors from offering employees the opportunity to voluntarily learn about their genetic medical risks. And the EEOC has recently “clarified,” under pressure from the Congress, the White House and the Business Roundtable, that a wellness program threatening large fines for non-compliance is “voluntary.”
There almost isn’t enough space on the internet to describe everything wrong with Aetna’s idea.
First, genetic testing may not work. For one thing, your genes are not static. Genes get turned on and off over a lifetime through interaction with their environment. Food, alcohol, exercise, stress, even the air and water you take in are all elements in a complex genetic mosaic that changes over time. Any genetic test done today is just a snapshot of risk. Woe befall the employee who thinks he or she is “safe” thanks to Aetna’s test…and abandons a healthy lifestyle, only to end up with a heart attack or cancer.
Second, so far it hasn’t worked. Curiously, the one employer Aetna offered up for interviews is itself in the lab business, Jackson Laboratories. Of 170 eligible Jackson employees, only 19 people are still in the program a year later, having lost on average 7% of their body weight. (Of any group of 170 obese people, about 19 would lose 7% of their body weight a year later anyway.) Jackson isn’t happy with the program — or its price tag. What makes it especially surprising that this poster child employer couldn’t put on his game face for this photo op is that Jackson Laboratories likely has customers or partners that are in the genetic testing business and would reap a windfall from employer genetic testing.
Jackson’s reaction validates the third point: if a lab company doesn’t like a program involving lab tests, why would any employer want to do this? Like all screens, genetic testing requires periodic vigilance at a very high cost, to have any possible diagnostic value. A claim that periodic genetic screening for common ailments (as opposed to diseases such as cystic fibrosis) will save money and lives is completely without evidence. (Inconclusiveness is an improvement over Aetna’s aforementioned obesity crusade, where the evidence clearly went the wrong way.)
No less a genetics expert than Frances Collins, the head of the NIH and former head of the Human Genome Project, has said that “most diseases are not single-locus genetic diseases and often are quite complex, involving many genetic loci as well as environmental factors.” Indeed, even supposedly common problems that wellness vendors rush to diagnose so they claim to have done something, such as metabolic syndrome, lack a genetic component that anyone actually caring for these people takes seriously.
Further, employers who engage in these activities expose themselves to legal risk because they are entrusting wellness vendors to safeguard information that employees consider both deeply private and potentially actionable. Staywell has already been breached, so it’s definitely possible.
Fourth, if genetic testing for heart disease or diabetes had any predictive value, the US Preventive Services Task Force would be endorsing it. Quite the contrary, it is so unaccepted that the USPSTF hasn’t even evaluated it.
Finally, why would an employee want to do this other than to avoid a fine? Employees’ biggest complaint about wellness is the massive invasion of privacy. So what does Aetna propose? Invading their privacy even more. Ironically, most employees insured by Aetna who actually want genetic testing for diabetes or heart disease from their physician would have to pay for some or all of it themselves. If Aetna thinks genetic testing is such a good idea, why not just cover it?
Putting it all together, Aetna’s proposal is exactly the opposite of what the wellness industry needs. Instead of more respect for employee privacy, it’s offering less. While experts bemoan overscreening, it’s offering more. And now that even the wellness industry trade association agrees that wellness loses money, it wants employers to pony up an extra $500/person.
And yet somehow Aetna maintains this is a great idea that employees will embrace and that employers will financially benefit from. Mr. Orwell himself would be very pleased with their doublespeak.