MedCity Influencers, Health IT

Orig3n goes pro with personal data sharing but raises questions in the process

Orig3n has entered what appears to be a national (and perhaps international) contest to quarterback the biggest, baddest, bestest genetic database on earth

orig3n website screengrab

I read recently that the San Francisco 49ers are kicking off a quarterback competition to decide whether Colin Kaepernick or Blaine Gabbert gets the starting job. They will be put through their athletic paces in training camp, where all of their teammates will participate in determining the outcome. But based on a recent deal the 49ers struck, with Orig3n, Inc., I was wondering why are they making this so complicated?

Gabbert and Kaepernick

Allow me to explain. The 49ers have entered into a deal with Orig3n to reward fans for making genetic contributions to populate their ever-growing database that informs pharmaceutical research. In fact, Orig3n has two uses for the gene samples they collect: the first is to build up LifeCapsule, which the company claims is the world’s largest blood cell repository dedicated to supporting regenerative medicine. That’s the primary focus of the 49ers deal.

The second use is for LifeProfiles, where consumers can learn more about their own genetic profiles in the quest to know their own propensity for greatness (by, for instance, comparing their sample to those from the 49ers bench). These tests offer the following claim: “the SUPERHERO assessment decodes secret information in your DNA, giving you insights into where your super-powers lie.”. They tell you, with some sheen of scientific specificity, whether the footnote on your cape should reflect your extreme intelligence, strength or speed.

So why not save everyone some time and just run Colin and Blaine through these tests? Note that the Superhero assessment from Orig3n costs only $29, while the test they offer to help you evaluate the quality of your skin costs $99, proving once and for all that people value beauty over intellect.

But it’s the Orig3n activity that will go on outside the gates of Levi’s Stadium that fascinates me more. Orig3n has entered what appears to be a national (and perhaps international) contest to quarterback the biggest, baddest, bestest genetic database on earth. There are lots of players in this particular competition. The U.S. government is trying to entice 1 million Americans to donate their genetic data. Every major health system in the U.S. is getting in on the action too, seeing the possession of this data as a major asset to be studied and, more importantly, sold. Pharma companies, tech companies, other genetics players such as 23andMe and a parade of others are amassing more genetic materials than the average fraternity house. One can imagine a world where we will have a myriad of standalone genetics databases, each branded with a different flavor of precision-ness, and all competing to be the supreme source of medical truth. What a weird concept. I can see it now: my precision medicine database has more superheroes than your precision medicine database!

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A Deep-dive Into Specialty Pharma

A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.

But I have to wonder, how will Orig3n’s (and any other organization’s) choice of gene collection venues affect the diversity of database they ultimately amass? Do people who have an affinity for football differ in some fundamental way from those who have season tickets to the opera? What is the genetic impact of mass beer consumption over a lifetime of NFL seasons? Would sampling at the San Jose Sharks game draw more bloodthirsty genetic types or just people who don’t mind driving the extra distance? If you did a deal with the Green Bay Packers, would you find that the sample had a higher level of cheese-related cholesterol and a warm-blooded phenotype that makes it seem perfectly reasonable to wear green and gold body paint in below-zero weather?

Cheesehead alert

And of course, there is the gender question. Far more men than women attend NFL football games. So how does a database even itself out? Does Orig3n have a deal in the works with the women’s professional soccer league? Or if they want large numbers, there is always Nordstrom.

This whole thing begs the question of whether the football players’ genetic samples should be included in the pool. Would there be an extraordinary concentration of tattoo ink muddying the samples? If the data collection exercise includes phenotypic data that is more than just biologic, I can only imagine the differences between team members and fans, the latter of which go to the games in part to consume mass quantities of carbs that are not likely part of the typical NFL training regimen.

Kaepernick and his tattoo muse

But perhaps the most amusing part of this program is the rewards. According to the press release, “The Faithful DNA program will provide patrons who donate their DNA to human genome research with the opportunity to win exclusive 49ers experiences and prizes.” I’m not sure if these exclusive incentives come in the form of bobbleheads, ticket upgrades or the opportunity to visit with Kaepernick’s favorite tattoo artist, but this could be fun. How about a lottery where the person with the most unusual genetic characteristics sample at each game gets tickets to the Super Bowl!

Orig3n has also created partnership programs with the Boston Marathon, Nascar and, best of all, the Wizard World Comic Con series. Now that last one is bound offer a serious diversification of the gene pool.– It won’t fix the gender challenge but will likely ensure that the nerd population is well-represented. And deals with the Euphoria Music Festival and SunFest Music Festival, among others, will ensure that the world’s clinical researchers will soon have access to meaningful clinical data on people who use recreational marijuana while standing too long in the sun.

There is great controversy around sharing profit with people whose data result in the creation of new pharmaceutical products, but the whole idea of paying people (in cash or in perks) to donate their genetic and phenotypic data may become more popular if large numbers of people are to open up their veins (or cheeks). Patients are being “invited” by their healthcare providers to participate in the U.S. precision medicine cohort, but if they get wind of the Orig3n deal they may ask for tax credits instead. There is already a significant precedent to pay people for their wellness data to incentivize them to comply; for instance, Aetna pays its employees $25/night for sleeping at least 7 hours, as evidenced by a FitBit device (up to a max of $500/year). So why not use this tactic to build the new and improved data silos that will, in many cases, make consumer genetics companies profitable?  I can only imagine the increase in volume Orig3n would get for promising aging SunFest concert goers that, in exchange for their cheek swab, they could have five minutes alone with Rick Springfield.

The idea that participants in these genotype/phenotype data collection programs will benefit in the immediate term, not just when the drug is FDA-approved 10 years from now, is an interesting turn of events. The companies doing the collecting are paying so the people with the genes and wearables will play– a major paradigm shift in the research world, aligning it much more closely with the marketing tactics of the consumer realm than the medical one. Perhaps the world of personalized medicine actually needs personalized rewards to make it scale – an interesting thought for the scientists in the crowd who are unaccustomed to this level of consumer marketing. I can see the infomercials now….if you send in your cheek swab in before midnight tonight, there just might be a pair of Ginzu knives in it for you.

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