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Your Employer’s Wellness Program Can Demand Your DNA | Al Lewis

DNA_Double_HelixAl’s excellent column in The Huffington Post, just published this evening.

 

Quizzify Q in B and W

Quizzify will never ask for an employee’s DNA

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.

via Your Employer’s Wellness Program Can Demand Your DNA | Al Lewis.

Newtopia Wants Your DNA for Aetna’s Wellness Program

We're sure nothing could go wrong when Aetna and a wellness vendor have your DNA

We’re sure nothing could go wrong when Aetna and a wellness vendor want your DNA

We often say on this site that “lying is part of wellness vendor DNA.”  However, we didn’t mean that literally–until Newtopia came along.  You see, Newtopia, like most vendors, lies — but they also actually collect employee DNA.

Quizzify Q in B and W

We think your DNA belongs to you

You might observe: “Wow, they collect your DNA? What an incredibly intrusive wellness program! This sounds like something Aetna would do.” This would be a reference to Dr. Aetna Will See You Now and its sequel. Yes, Aetna is Newtopia’s biggest fan, but the particular numbers below are made up by Newtopia, not Aetna. In all fairness to Newtopia, many of what could be termed “lies” could charitably be characterized as “very misleading but technically accurate statements,” So ironically it would be us who would be lying if we said these were all lies. Hence we will call them “gaffes,” a category which includes lies but also includes situations in which the truth shocks the conscience as much or more than a lie would.

 Gaffe #1: Engagement:

To Newtopia’s credit (not unlike HERO, which did the same thing in its report), they put the invalidating information about their engagement right on their website.  This again proves our mantra from Surviving Workplace Wellness that: “In wellness, you don’t have the challenge the data to invalidate it.  You merely have to read the data.  It will invalidate itself.”

Specifically, for some reason Newtopia provided a link to an Associated Press story, which they called a “profile,” but obviously we wouldn’t be linking to a puff piece “profiling” them.  They Said What? only links to real reporting, which is invariably unflattering to wellness vendors and which would never be considered “profiles.”  Puff piece or real reporting?  You make the call — We can’t both be right.

newtopia ap profile

Among other things (and there are plenty of other things, which we will get to) the AP reported that of 130 employees of the profiled customer organization, Jackson Laboratory, invited into the program, only 15% remain one year later,

newtopia ap stats

However, the website itself proclaims:

newtopia engagement

Maybe “unheard of engagement” technically isn’t a lie. Maybe they meant: “unheard of” in that an engagement rate as low as 15% would be unheard-of.  We doubt that because elsewhere they cite their use of “engagement science,” whatever that is. (Funny thing, Quizzify, the only company to literally financially guarantee increased engagement, doesn’t use “engagement science.” Instead Quizzify simply offers employees a tool they will want to use.)

Gaffe #2: Success

On its website, Newtopia’s case study for this customer, Jackson Labs, states:

newtopia jackson labs

However, the AP’s Tom Murphy borrowed a trick from Reuters’ Sharon Begley—and actually did reporting. They asked Jackson Labs itself for some statistics. They learned that of the 28 employees who submitted to Newtopia, only 19 remain. So even if every single one of those 19 lost weight, only 68% — not 92% — would report weight loss.  (Newtopia might respond that their website’s 92% statistic was after six months whereas the 68% was after a year, thus begging the question of why they decided not to update the statistic on their website.  It’s also a window on the truism that the longer the measurement period, the more people regain the weight.)

Whether 68% or 92%, Newtopia credits its results to “science.”   Indeed their website loudly proclaims:

newtopia science drives

Gaffe #3: Made-Up Facts 

One of the darnedest things about science is, it is a fact-based discipline.  You can’t “drive” your own facts. For instance, their website proclaims:

newtopia 3x statistic

Productivity is defined as “output per man-hour.” Therefore in a company that is “3x more productive,” each employee gets 3x more work done.

If Newtopia’s statement is accurate, and if Walmart promoted health, their cashiers could ring up 3x more customers. Doctors could see 3x more patients. Pilots could fly planes three times faster. Teachers could teach three times more classes.  The recorded messages on hold would tell us that customer service thinks our calls are three times more important to them…

Another made-up fact:

newtopia incidence rate

Quite the opposite of “failing to control the incidence,” current approaches have in fact dramatically reduced the rate of heart attacks and strokes.  Don’t take our word for it.  Here are the federal government’s statistics for heart attacks:

heart attacks

 

During most recent available period, in which the population over 50 grew close to 20%, the number of heart attacks fell 19%. Not bad for “failing to control the incidence.” The wellness industry, of course, had nothing to do with that decline, which encompassed all age categories and payers.

Strokes also declined quite a bit. Curiously, strokes increased significantly in the age categories in which wellness programs were supposed to prevent them, paralleling the dramatic growth of the wellness industry from 2001 to 2012. They declined dramatically in the >65 population, which doesn’t have access to workplace wellness and which grew close to 20% over this period.  So it looks like the only industry that “failed to control the incidence” was: the wellness industry.

strokes 2001

strokess 2012

 

Gaffe #4: Unsupported Statements

Another thing about science? Credible scientists don’t make statements that aren’t “driven” by evidence. Note this statement:

newtopiaitworks

Besides being uncited and disputed by its largest customer (Aetna, which “collaborated” on the HERO report admitting wellness loses money), note the wording. It makes it sound like the more you spend on wellness, the more your costs fall. The implication is that spending an extra $500 on Newtopia’s genetic testing (over and above the cost of a regular wellness program) will then save even more.

Gaffe #5: Newtopia’s Privacy Policy

If only this were a lie!

One should be able to assume that if your employer forces you (under threat of fine) to give up your DNA, that the company using it will destroy it after use. The fine print is breathtaking. Whereas Quizzify’s privacy policy requires 13 words and is prominently displayed on our home page (“We can’t misuse or lose personal health information because we don’t request any”), Newtopia’s is buried in a linked footer and stretches on for 900 words.  Apparently they will be using your DNA for their own purposes–eventually profiting on it, without giving you any royalties. It will allegedly be de-identified, but privacy guru Anna Slomovic notes that de-identified data can and has been re-identified.

Newtopia also admits they could make a mistake with it.  OK, they don’t exactly admit it.  They imply it.  They say your DNA could be used in “error management,” and by definition there is no need for error management unless you make errors. And with the full list of people who have access to it — eight categories of occupation including “naturopathic doctors” plus unspecified “other persons” — errors are inevitable.

newtopia privacy policy

 

People sometimes complain that all we do is criticize wellness vendors. Newtopia is Exhibit A in why that’s often not such a bad idea.  Even Newtopia doesn’t seem to mind–we gave them the opportunity to fact-check, rebut or comment on this, and they didn’t.

Anna Slomovic| Managing Personal Data | Genetic Testing Comes To Wellness Programs

DNA_Double_Helix

Our colleague, privacy expert Anna Slomovic, has put up at her blog an excellent essay on the emergence of genetic testing in workplace wellness programs.

We need to question the voluntariness of participation in wellness programs, the value of the testing being offered, and the appropriateness of wellness vendors exploiting the information they collect. This is even more important when genetic information is involved.

Quizzify 4

Quizzify gathers no sale-worthy information from employees. Nothing. Zip. Nada.

via Anna Slomovic | Managing Personal Data | Genetic Testing Comes To Wellness Programs.

Dr. Aetna Will See You Now: The Sequel

EI___1984_INGSOC_T_Shirt_desig_by_zoopee

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.

Quizzify

The only personal information we ask for is an email address

 

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