Downside of Landmark Brain-Trauma Test: The Grief of an Uncertain Future

Will Carroll@injuryexpertSports Injuries Lead WriterJanuary 23, 2013

FOXBORO, MA - OCTOBER 18:  Tom Brady #12 and Junior Seau #55 of the New England Patriots stand on the sideline in the fourth quarter against the Tennessee Titans on October 18, 2009 at Gillette Stadium in Foxboro, Massachusetts. The Patriots defeated the Titans 59-0.  (Photo by Elsa/Getty Images)
Elsa/Getty Images

A new test, as reported Tuesday by ESPN, is being described by several experts in the brain injury field as the "holy grail" of CTE (chronic traumatic encephalopathy). But science still has a long way to go in determining the condition's relation to concussions and in finding ways to counteract it. In the meantime, athletes might find the test results very difficult to live with.

In the study, scientists at UCLA discovered proteins associated with the brain disorder, marking the first time that living people (in this case ex-players with at least one documented concussion) were found to have markers. Up to this point, all diagnoses of CTE were made at autopsy, including the recent findings with Junior Seau's brain.

The test focuses on tau proteins. The ability to detect tau proteins seems important, but let's be clear about what was found here—tau proteins were found in locations similar to those found during autopsies using advanced imaging techniques. These same proteins may very well be found in perfectly healthy brains as well, or in people that are not going to develop symptoms. Studies have not yet been done on any sort of control group. 

Dr. Julian Bailes, one of the co-authors of this study, was quoted as saying that the findings here are the "holy grail." His assertion that the ability to find this marker now allows researchers to move beyond diagnosis and on to treatment is a significant one if true, but others estimate that this could be years away. Problems of scale and discovery seldom operate on the expected schedule.

Dr. Gary Manley, a neurosurgery professor from UC San Francisco, told the The New York Times that “there’s little that substitutes for following these people for years. We are right at the very beginning of this." The possibility exists that treatments could result from an earlier diagnosis, but the tracking will also have some value—especially because there is such little understanding of what truly results in CTE and the heartbreaking symptoms.

This scenario is problematic for many reasons. Right now, there is nothing that science can offer to prevent what we suspect is happening to athletes—like football players—who suffer head trauma.

And now, compounding the issue, any player at any level with as little as one concussion could theoretically be discovered to have the CTE markers, leaving him to face the fear that he is now potentially at risk for a condition that often develops serious symptoms that mimic Parkinson's disease, ALS or even Alzheimer's.  Without any treatment options, many might find themselves staring into the same dark abyss as did former NFL players Seau and Dave Duerson (who, like Seau, committed suicide). A good argument could be made that just a diagnosis could exacerbate the issues.

Tau proteins are not just found in CTE cases. Tau proteins have been implicated in several diseases, including Alzheimer's, epilepsy and Pick's disease. These types of conditions are grouped together in a class called tauopathies. Recent studies involving tau proteins and Alzheimer's illustrate the way this research cuts both ways. We understand more about how these diseases work, which moves us forward, but there is no treatment in sight. 

One concern with this detection was raised by Sports Illustrated science writer David Epstein, who noted that tau proteins could be present in many brains, not just those with a demonstrated CTE. Epstein also pointed out that until this technology is demonstrated on an active player, there will be open questions.

While I agree with Epstein and would even take this further, the fact is that the lack of treatment options makes a diagnosis problematic from a psychological and ethical standpoint. A diagnosis without clear pathology or understanding is seriously problematic for parents, unions and players alike. There are far-reaching ramifications in terms of insurability and employability that go far beyond the medical issues.

The development of this process, using a special kind of PET scan, is significant, but patented. (It is known in the report as "2-(1-{6-[(2-[F-18]fluoroethyl) (methyl)amino]-2-naphthyl}ethylidene)malononitrile (FDDNP)-positron emission tomography," so it's definitely going to need a better name!) It is unclear if this is a technique or a new type of machine. This is far from the only study of this type that is ongoing, and many promise more specific results.

While this is a significant step, the study is only the first step in a very long journey—a journey that must proceed with caution to protect the privacy, health and financial status of players. Until the development of treatments, knowing a diagnosis of CTE amounts to cruelty, while it also raises serious legal issues (as noted above) for parents, unions and players.

It's bad enough to imagine being Seau or Duerson—ex-NFL players that were rewarded for their talents and who paid for the damage done to them. A workable diagnostic test opens up the possibility that a parent of child might have to face that their child will grow up with a dark cloud of brain injury over them.

At the time that this test or something similar gives us a positive test for a college or high school player, we will be facing the end of the game of football itself.


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