Sunday pro football games aren’t the place to serve up genetic screening malarkey

ravensLet’s give a hurrah for Maryland health officials — they threw a red flag at a high-tech startup that planned with the Baltimore Ravens football team to serve up a mass genetic screening test at a recent game. The blunt reality is this would have been genetic malarkey.

This incident should serve as a reminder, caveat emptor, to consumers, even in settings of good cheer. It should offer a caution to those who stage big public events, like sports leagues, that health matters and highly personal and confidential medical information isn’t handled well at spectacles.

Shall we also offer a Bronx cheer for Orig3N, a Boston company that offers direct-to-consumer “genetic testing,” and talks on its web site about everything from organ donation to regenerative and personalized medicine as well as its commitment to public service? The company, a new Ravens sponsor, planned a recent promotional Sunday when it would offer its mouth swab tests to 55,000 fans flocking to the contest against the Cleveland Browns.

But Orig3N apparently did not check in with federal or state officials about the planned mass screening. And, after Maryland health officials expressed concerns, the event, thankfully, was put off.

That it got as far as it did is concerning, as is the prospect that the dubious publicity it already has generated may only benefit Orig3N.

That’s because, as the information site BuzzFeed has reported, the company targeted consumers with questionable health information about its product, making “dubious claims” about how it could detect and determine whether subjects had “four genes [that] influence health and wellness traits, such as how your skin will age, whether you learn words quickly, and your athletic prowess.” But not only that, the “average test-taker [also] may not realize, for example, that Orig3n had the right to sell or give their genetic data to a third party — like an advertiser or a drug company — as long as their name and other identifying information was removed.”

Orig3N insists its test kits, which can cost anywhere from $29 to $149, are valid and useful. It says it safeguards subjects’ highly personal and confidential information. But the company has already revised its service terms, including information on credit and health information it collects, after media and official queries.

Federal and state officials aren’t sure the football game promotion can be allowed, since Maryland, for example, bars most direct-to-consumer health lab testing, and requires a physician order for genetic testing. Federal officials say they’re uncertain if Orig3N’s mass exam meets U.S. standards for medical lab testing.

In my practice, I see not only the major harms that patients suffer while seeking medical services but also the injuries that can be inflicted on consumers when their legal protections are breached. Companies like Orig3N can’t have it both ways: They shouldn’t assert the utility and validity of what are, effectively, medical products, while at the same time hyping them as if they are a harmless and cool new kind of adventure toy or game.

Genetic testing is serious stuff, a key component of what may eventually become new and better medical care in the rising field of personalized medicine. The genetic code that makes you up is complex and deeply personal, information that shouldn’t be frittered away in the din of a game Sunday. That’s far from your exercising one of your most fundamental and important rights in medical care: informed consent. It is the duty of anyone who provides any kind of medical treatment to provide the full, appropriate information so all of us can use our right to decide what happens to our own bodies.

You may think you reviewed a testing company’s long, detailed privacy disclosures. But in a standing up glance, you can’t be sure in whose hands your information, purportedly stripped of identifiers, will end up. You may give away critical data on yourself and your descendants, their illnesses and vulnerabilities to lordy knows who. And if you think companies won’t do this, well, how else will they make themselves big and profitable? By their testing? If you think that service alone will do it, you likely imagine that the Ravens and Redskins will play each other in this year’s Super Bowl: The companies hope to build giant genetic databases, which will be highly valued by Big Pharma and medical device makers.

If professional sports franchises want to support their communities and improve fans’ health, they could consider working with caregivers to offer vaccinations for the flu, HPV, whooping cough, pneumonia, and other diseases. They could work with hospitals and banking agencies on blood drives. They could provide ways so medical professionals could help consumers get tested for hypertension, sexually transmitted diseases (including HIV-AIDS), or hepatitis. How about vision and hearing tests for kids and seniors?

Or, for the NFL, how about worrying about the head and brain damage players suffer on the field, especially with yet another revelation that onetime New England Patriots star tight end Aaron Hernandez, who was convicted of murder and committed suicide, suffered from an unusually advanced case of chronic traumatic encephalopathy or CTE?

If you’re obsessed about experimenting with direct to consumer genetic tests, talk with your doctor first, please. Then consider if the T-shirt you don for the next football game  should be emblazoned with a raven—or a guinea pig.

Patrick Malone & Associates, P.C. listed in Best Lawyers Rated by Super Lawyers Patrick A. Malone
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