Monthly Archives: April 2015

Genetic Testing Moves Into World of Employee Health

Your employer may one day help determine if your genes are why your jeans have become too snug.

Big companies are considering blending genetic testing with coaching on nutrition and exercise to help workers lose weight and improve their health before serious conditions like diabetes or heart disease develop. It’s a step beyond the typical corporate wellness programs that many companies are using to make workers more aware of their risk factors and improve their health.

Genetic testing in corporate wellness programs also is relatively uncharted territory. Many employers and insurers cover these tests and counseling for medical reasons, like helping people determine if they are more prone to certain cancers. And earlier this year, President Obama asked Congress to approve spending on medical research into using a patient’s genes to tailor care.

Mixing generic testing into a wellness program may create a tool attractive to employers desperate to cut health care costs, one of the biggest expenses in a company’s budget. But employee benefits experts have doubts that such a novel approach will gain momentum. It first has to conquer steep challenges like employee worry about sharing such sensitive information and employer skepticism about its effectiveness.

“They are waiting for evidence that this genetic testing will change risks,” said Dr. Jeff Levin-Scherz, a senior consultant with the benefits consulting firm Towers Watson.

Sparking the push to add genetic testing into corporate wellness offerings is a new program from the health insurer Aetna and Newtopia, a small Canadian company that creates personalized health-improvement programs. Their offering uses data from initial wellness program steps like physicals or blood tests to figure out which employees are vulnerable to metabolic syndrome.

That’s a group of conditions like high blood sugar, poor cholesterol or a big waistline that, when they occur together, increase a patient’s risk for heart disease, stroke and diabetes.

Those people are invited to get testing that analyzes a narrow band of genes that can tell patients things like how their body processes carbohydrates or fats, or if they have a genetic marker tied to compulsive eating. Patients then work with a coach to combine that information with a plan to improve their health.

Aetna and Newtopia are selling their program to the insurer’s biggest employer customers, and they are seeking to sign up to six companies this year. Spokeswoman Michelle Grant said the cost for companies will be on par with other disease prevention programs that attempt to improve a person’s health using live, individual coaching and apps. She did not provide specifics.

Aetna appears to have this niche to itself for now. None of the other major health insurers in the United States offer genetic testing as part of a wellness program.

The new program was tested on employees at Aetna and The Jackson Laboratory, a Bar Harbor, Maine, company. Scott Craig, a maintenance worker at the laboratory, decided to give the test a shot last year because his weight had soared to 335 pounds and his blood pressure and blood sugar levels were up.

The 53-year-old mailed a saliva sample in for analysis. The result? He has no genetic traits that help explain his weight gain.

“In other words, I got nothing to blame,” he said. “Finding that out, oddly enough, seemed to motivate me.”

Craig connected with the program’s health coach, who helped him figure out how to squeeze in exercise three times a week and improve his diet. Newtopia also started sending personalized vitamin supplements and offering online contests that taught Craig how to track his daily activities and think of everything he did as a way to burn calories.

Craig was one of 130 laboratory employees invited to try the program. A total of 28 started. More than a year later, only 19 still participate. Most have lost 7 percent of their body weight or more, said Wayne Gregersen, who works in the company’s compensation and benefits department.

Gregersen, who estimates that the program costs $400 to $600 more per person than a similar, high-end health coaching option, liked the results. But he said the company must learn why participation was so low, especially since the laboratory focuses on genetic research.

He also said he has a hard time understanding the value of genetic testing but plans to give the Aetna-Newtopia program another year.

It may take several years before a company sees a drop in health care costs from changed employee behavior, said Rose Stanley, a practice leader at WorldatWork, a nonprofit human resources association.

But before companies can even see results, they have to sign up employees. That’s a challenge for any wellness program, let alone one that includes genetic testing.

Many employees just don’t like sharing personal information. In some cases, they worry that the boss will learn that they are developing an expensive medical condition, even though these programs are run by outside vendors that don’t share personal details with employers. A federal law also protects against genetic discrimination.

Companies also have to attract workers who will not only realize that they have a problem but also will work to fix it even if they fail at first, Stanley said.

In addition to employee concerns, there are questions about whether genetic testing can be helpful in dealing with metabolic syndrome. Mayo Clinic endocrinologist Dr. Michael Jensen says, as far as he knows, genetic testing isn’t used as part of care.

He said genetic factors linked to obesity are hard to analyze, and more than 95 percent of weight gain is tied to factors like diet or exercise.

“Genes don’t explain that much of the variability,” he said.

Still, genetic testing could motivate some to improve their health, even if it sheds little light on their condition. Craig, the Jackson Laboratory worker, has dropped 50 pounds since he started working with his health coach.

“I’ve come a long way since then,” he said. “Two-hundred eight five pounds may sound like a lot to you, but to me it’s really good.”

Tom Murphy , AP

The NBA’s Dystopian, DNA-Testing Future

The NBA’s new drug testing policy will allow for a lot more than just checking for juiced up players. It could allow for tracking each player’s every move—from a drive to the basket, to a drive to a girlfriend’s house. Sound far-fetched? Owners are saying they want it to be a reality.

On Thursday, right before the before basketball fans were gearing up for the start of what should prove to be a thrilling slate of playoff games, the NBA and the National Basketball Players Association slipped in the equivalent of a Friday news dump.

Namely, starting next season, it would begin testing players’ blood for the presence of Human Growth Hormone.

“All NBA players will be subject to three random, unannounced HGH tests annually (two in-season, one off-season), and players will also be subject to reasonable cause testing for HGH,” the league said in its statement. Penalties for a positive test will start at a 20-game suspension for the first infraction, forty-five for the second and an outright disqualification from the game should the player get popped a third time.

The NBA has never required that players subject themselves to blood testing before, but both Major League Baseball and the National Football League already test for the presence of HGH, and other athletes in sports worldwide are subject to the far more stringent procedures of the U.S. Anti-Doping Agency and the World Anti-Doping Agency where they “can be randomly tested 24 hours a day, 365 days a year.”

The thing is, for Michele Roberts, still less than a year into her inaugural term as executive director of the NBPA, this scans as wildly out of character and a major concession to ownership, especially in light of the hardline stance she’s taken on a score of issues.

Roberts has made it perfectly clear that Silver has a no-holds barred fight on his hands with regards to the league’s age limit and the division of revenue between owners and players, saying in no uncertain terms that the current system is “incredibly un-American. My DNA is offended by it.”

She’s supported the political statements and protest actions on the part of LeBron James and others, questioned how the media functions and declared that the union will be investigating what actually went down between the police and Thabo Sefolosha last week.

So why would she cave here? Well, it’s partly due to the fact that Roberts didn’t have much choice. During the 2011 collective bargaining agreement negotiations back in 2011, her predecessor, Billy Hunter “agreed to a process for determining how HGH blood testing would be implemented.” Working out the details of the number of tests per season and the length of the suspensions was all that she had to work with.

Also, both Silver and Roberts see (or at least publicly claim that they see) PEDs as a relatively minor issue.

“We may be just that we’re fortunate in the NBA that there is a cultural view that those types of drugs are not helpful for performance,” Silver said during the 2014 MIT/Sloan Sports and Analytics Conference. “I’ve been in the NBA for 22 years—I talk to players all the time, I talk to retired players, and I don’t hear about it.”

“Frankly, I don’t think that it’s a real problem in our game, as compared to some other games,” Roberts told ESPN’s Pablo Torre. “I don’t hear players telling me that they’re opposed to the concept. It’s simply the method.”

Granted, no high-profile NBA stars have gotten pinched, unless you’re willing to waffle on the definition of a “star” and include Rashard Lewis and Hedo Turkoglu. Certainly nothing along the lines of Lance Armstrong being stripped of nearly every title he’s ever held or Alex Rodriguez being banished for a year and docked millions in salary.

Let’s assume that Roberts and Silver are correct, and this isn’t a rampant problem. And yes, that statement should be met with a serious raised eyebrow, especially in light of the director general of the World Anti-Doping Agency’s 2012 statement that “you’ve got to be very careful when you start saying performance-enhancing drugs are not beneficial in any sport, because you’re going to be proven wrong. And you’ll be proven wrong when you’re not expecting it.”

The reason this agreement is significant is that it’s not just a question of making sure that the NBA isn’t packed with ‘roided-up supermen.

Roberts’ point as to the method of testing—the extracting of blood—is worth noting. Not only because a precedent has established should commissioner Adam Silver decide at some point in the future that far more invasive testing—like requiring a biological passport—is necessary, but because of the frightening steps in biometric testing and analysis that are already underway.

In this ESPN the Magazine article from October you can read about the “skin-adhesive, torso-mounted sensor that is colloquially known within front offices as ‘the patch,’” which can “discern when a player pulls on the covers at night, when he lies down, when his pulse races and—on account of alcohol’s observable effect on heartbeat—when he passes out drunk.”

Now imagine a team compiling this data and shoving it in front of said player’s agent during contract negotiations, armed with proof that some nighttime cavorting might’ve cost them a game or two.

Mark Cuban, no stranger to innovation, tests his players’ blood to “monitor for any abnormalities.” He insisted that this was just a question of using all available methods to increase performance. But there are no structures in place to check his or any team’s behavior.

Then there are the USC scientists hard at work on developing “minimally invasive implantables,” that would stay in an athlete’s body for a year or two and be capable of “feeding key biometric information to your phone.”

“I think all fluids will be extracted in five years,” the recently-retired Miami Heat forward Shane Battier said in the same interview. “I’m glad I’m done.”

To her credit, in her interview with Torre, Roberts addressed her serious reservations with this not-too-distant science fiction future, one in which employers are able to monitor their employees’ activities around the clock and have access to their medical and eventually genetic information.

“If you’re taking that data and suggesting that based on this guy’s performance over a period of a week, or a month, or a season, you predict A, B and C with respect to that player’s effectiveness down the road, then I get really, really troubled,” she said. “I see it as a potential slippery slope…The bottom line is, there are notions of privacy that shouldn’t be waived or waive-able simply because you play in the NBA.”

This brings us back to Thursday’s agreement. It seems as if Roberts is sacrificing what she sees as a minor pawn—HGH testing—because she’s prioritizing the more immediate and contentious battles outlined above: the new CBA, the age limit, and so on.

Further, Roberts has to know that Labor Rights and Privacy issues are a really tough sell with the public when it comes to athletes, especially when the other side can sling Goodell-ian pabulum about “protecting the integrity of the game” and clutch their pearls about “setting an example for the children.”

In fact, the general reaction to all the high profile suspensions in pro sports among fans has not been to question the efficacy or even the morality of the entire drug testing apparatus, but to call for greater authority and to be placed in the hands of management.

You’ve got to look far and wide before you’ll dig up a hot take suggesting Alex Rodriguez got royally hosed—that his punishment was about the powers that be attempting to whitewash their own culpability and the Yankees’ feverish desire to recoup as much of what turns out to have been a royally terrible contract as possible. It’s also worth noting that it he wasn’t caught because of some perfectly designed mousetrap. Far from it. According to his doctor/dealer, Anthony Bosch, A-Rod “passed no less than a dozen MLB-required drug tests.” He’s a pariah because a low-level stooge straight out of an Elmore Leonard novel ratted him out.

That’s not an attempt to excuse A-Rod. He remains a serial liar and yes, a cheater. It’s pointing out that prohibition doesn’t work, period. Those that might profit off either the sale or usage of banned substances are always going to be a few steps (or even miles) ahead of the gatekeepers charged with catching them.

Even after years of ever-increasing efforts to rid pro cycling of doping, for example, the president of Union Cyclist Internationale said that the problem remains “endemic.” One witness that was brought before the Cycling Independent Reform Commission went so far as to estimate that “90 percent of top-level riders still dope.”

In his equally brief tenure, Adam Silver has proven to be one of the most highly respected, forward-thinking commissioners in sports. And he’s been willing to dive into what were previously deemed ethically murky waters, like supporting legalized gambling.

That said, as the science continues to evolve and grow more sophisticated, the hope is Roberts won’t back down nearly so easily. It’s clear that a huge chunk of Roberts’ job is going be providing Silver with an equally forceful counterpart, and she knows it.

When asked what she would like her legacy to be, Roberts said, “She helped us rebuild our union. And made it the strongest union on the planet.”

As she told ESPN, the idea that players were giving up bodily fluids without any idea what was being done with it “made [her] hair curl.”

Robert Silverman, Daily Beast

IBM and Apple want to share how you are with others

IBM has launched a health unit to make sense of the wealth of data created by the boom in fitness trackers and apps.

Watson Health aims to create “a secure, cloud-based data sharing hub” that can feed analytic technologies, it said.

It could provide diagnoses or health alerts which could also be sent to doctors, carers, or insurers for example, with the user’s permission.

IBM has teamed up with Apple and wants to launch “new employee health and wellness management solutions”.

The company says it is buying two firms to help with its goal: Explorys which has one of the largest healthcare databases in the world and Phytel that works with digital medical record systems to reduce hospital readmissions and automate communications.

IBM says it wants to provide “individualised insights and a more complete picture of the many factors that can affect people’s health”.

Privacy concerns

There has been concern over personal technology being used to help diagnose an individual’s condition.

In the US, some apps that claimed to diagnose cancer, for example, have been criticised by the Federal Trade Commission.

There is also concern over the sharing of health data. Companies including Jawbone are talking to firms about how personal fitness trackers could be used to monitor a workforce.

Christopher Coughlan, a UK solicitor who has written on the subject advises bosses considering such a move to be careful:

“If you rely on consent it must be freely given. This means a worker must be able to say ‘no’ without a penalty being imposed and must be able to withdraw consent once given.

“A person is more likely to be in this position at the recruitment stage than when they are employed.”

Insurers are also interested in monitoring customers. UK health insurance firm Vitality is incentivising policy-holders to take up a more active lifestyle by offering rewards for certain tasks that can be tracked through personal fitness devices.

GP welcomes move

GP Dr Ellie Cannon welcomed the move by IBM:

“It is always difficult to gauge how much exercise or calories a patient is describing and this is an accurate way to know.

“On a larger scale… the data could provide evidence to back up or dispute well-known health claims such as how much sleep we need or which exercise is most effective.”

That could be aided by Apple’s announcement today that its ResearchKit software that helps gather health data from iPhones is now available to anyone.

It’s already been used to develop apps to study asthma, breast cancer, cardiovascular disease, diabetes and Parkinson’s disease, says Apple.

Dan Simmons, BBC

Ancestry.Com Is Quietly Transforming Itself Into A Medical Research Juggernaut

In 1984, a genealogy geek named John Sittner published The Source, a book meant to unearth and analyze never-before-seen records that genealogists could use to put together family histories with unprecedented detail. Several years later, he founded Ancestry magazine to teach people how they could use public archives and technology — which, back then, meant CD-ROMS and primitive websites and search engines — to build out their family trees.

Sittner sold the company long ago, but three decades after it began, Ancestry.com — the $1.6 billion Internet company that his magazine evolved into — is poised to become one of the most unlikely, yet powerful, scientific tools in the world. For about three years, it’s been collecting and analyzing genetic information through a service called AncestryDNA, and in the process, quietly asking consumers if they’d be willing to share their data with Ancestry for research. To date, it’s banked more than 800,000 samples from customers all over the world, rivaling the database of Google-backed genetics-analysis company 23andMe, which boasts about 900,000 samples. And now, armed with mountains of health data, Ancestry.com is slowly transforming itself from a retiree’s hobby into a medical research juggernaut.

“We actually do think that health is a pretty natural extension of the core mission to help everyone discover, preserve and share their family history,” Ancestry.com CEO Tim Sullivan told me earlier this week, during a visit to the company’s San Francisco offices. “We’re exploring ways that we could participate in health and provide our users with health insights, for sure….ways that we could leverage the data we’ve aggregated to support research efforts, similar to what 23andMe has done with Genentech and others.”

Long before Ancestry.com got into the DNA game, it had ties to the Mormon church. Its owners were two Brigham Young University grads who had made their fortune selling Latter-day Saints publications on floppy disks. Access to Ancestry.com was free at LDS Family History Centers, and recently the company signed a deal with the church’s genealogy non-profit, FamilySearch.org.

Ancestry.com’s huge advantage over services like 23andMe is its age; since it has been collecting ancestral data about its users for decades, it knows health information not just about its users, but about their great-grandparents and great-great-grandparents. That information, coupled with surveys and modern-day genetic testing, can inform users of any hereditary conditions that run in their family, and help them project health problems in their future. Recently, the company has been testing a “family health history experience,” which will eventually help people use their family trees to aggregate family health history from their living family members.

“Our records give us a lot of family health history. It’s super interesting. Your family health history is what your doctor always asks about. It’s extremely informative for your future health,” said Kenny Freestone, the product director for AncestryDNA. “The actual genetic markers and data also are informative, but they’re one piece of the data. We are really interested in a holistic approach.”

As Ancestry.com pivots into medical research, it would be wise to learn from the example of 23andMe, which has spent much of its life tangled up with federal regulators. 23andMe is Silicon Valley’s biotech darling — a sexy, headline-grabbing company that was co-founded by Anne Wojcicki, a biologist who married Google co-founder Sergey Brin—but its reception by the government has been less glowing. After being told that it wasn’t allowed to market its spit-in-a-vial genetic test as a medical diagnostic, 23andMe went ahead and did it anyway. Last year, the U.S. Food and Drug Administration sent the company a cease and desist letter, essentially shutting down its direct-to-consumer genetics arm domestically. In February, the company got the FDA’s green light to sell consumers its genetic test for Bloom Syndrome, a rare genetic condition.

Outside the consumer realm, though, 23andMe has had some victories. The company’s massive database landed it some megadeals with pharmaceutical giants Genentech and Pfizer earlier this year, and last month, it launched its own drug-discovery lab, 23andMe Therapeutics.

Ancestry.com has a chance to succeed on the same scale, but first, it will need to navigate some of the same pitfalls 23andMe did.

“We want to be the largest personal genomics company on the planet,” Sullivan said. “But we want to get it right.”

Already, Ancestry.com is marketing a spit-box test similar to 23andMe’s that analyzes a user’s DNA and spits out a detailed breakdown of ethnic heritage, including where the user’s her ancestors came from, and which other Ancestry.com users he or she might be related to. Since it doesn’t have approval to conduct medical diagnostic tests, Ancestry.com can’t tell users if their DNA indicates a higher risk for ovarian cancer or Alzheimer’s disease. But the company is getting ready to talk to the FDA about that, and hopes to win the approval that 23andMe didn’t.

As it aims for the consumer DNA testing market, Ancestry.com is continuing to gather massive, massive amounts of information about users and their families, as it has done since the early days. This week, the company unveiled Ancestor Discoveries, a product that automatically identifies ancestors going back to the 1700s, drawing on the company’s treasure trove of archival and crowdsourced historical documents, public records, and photographs. And the company has plans to expand to Mexico and Germany because the data generated in those markets will beef up the offerings in the U.S.

Like 23andMe, Ancestry.com eventually hopes to make money by selling anonymized data about its users to large pharmaceutical and biotech companies. Already, the site has has had some initial conversations with companies that “might value [its] data for purposes of research,” Sullivan said, though they haven’t struck any deals yet.

Those deals, if they happen, risk sparking privacy worries among Ancestry.com’s users, as they did when 23andMe began selling its data to the highest bidder. But Sullivan and Freestone are confident that even if some users grimace at the idea of their genetic information being sold to Genentech or Pfizer, the long-term benefits will make the discomfort worth it. After all, when you go to the doctor, one of the first things they ask for is a medical history of you and your relatives. If Ancestry.com is able to merge its collection of family trees with a large-scale DNA database, it would create a useful, generation-spanning fount of medical information, which could help millions of users see the health problems that await them and take preventative steps.

“As these networks grow, maybe there’s some really interesting leaps we can make,” Freestone said. “Here we’re leaping from genetic markers to potential ancestors. Can we leverage this sort of technology into future health predictions also?”