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  • BIOETHICS FORUM ESSAY

NFL and Dementia: Research Ethics Joins the Fray

It’s not often that professional football, family caregiving, research ethics, and a Congressional hearing are wrapped up in one not-so-neat package. But the latest chapter of the controversy about the link between the hard hits that characterize the game (and delight the fans) and early-onset dementia brings all these elements together.

Last December I posted an item on Bioethics Forum about the exclusion of players’ wives – their primary caregivers – from an NFL meeting about dementia. It concluded by referring to an NFL study then underway. Now, the NFL is running as fast as it can away from the findings of the study.

The study, conducted by the University of Michigan’s Institute for Social Research, found that Alzheimer’s disease and other memory problems appear to have been diagnosed in football players at a rate 19 times higher than the normal rate for men aged 30 through 49. These findings are consistent with several other independent studies.

The NFL’s response was to criticize the methodology of the study they had commissioned. The Michigan researchers conducted a phone survey of 1,063 retired players who had played at least three seasons. The questions came from the standard National Health Interview Study, which allowed a comparison with national data. This study, like all phone interview surveys, has limitations and does not make a definitive link between concussions and dementia.  Nevertheless, the findings cannot be dismissed.

The NFL countered by saying that it is now conducting a different kind of study. Dr. Ira Casson, a neurologist at Long Island Jewish Medical Center, will examine in a battery of tests 120 men aged 30 to 60 who played two seasons or more in the NFL and 60 control subjects who played only in college and no more than one professional season. The study is thus focusing on differences between college and NFL players, not on NFL players and the general population.

Outside experts who have reviewed the study point out that the numbers are too small (lack sufficient power, in statistical terms) to detect significant differences. Furthermore, by recruiting subjects by mail and phone, researchers will be skewing participation toward players with fewer cognitive problems.

The biggest problem, however, concerns Dr. Casson himself. He has been a vocal defender of the NFL and the major naysayer about all the previous studies showing a link between football and dementia. Moreover, the medical director and cofounder of the facility at which the players would be examined, Dr. Elliot Perlman, is the team physician for the Jets and a member of the NFL’s concussion committee.

These associations did not escape the House Judiciary Committee, which held hearings on October 29. Rep. Linda Sanchez (D-CA) said she was reminded of the “tobacco hearings pre-90s when they kept saying, “Oh, there’s no link between smoking and damage to your health.”

Roger Goodell, the NFL commissioner, said that no issue had taken more of his time and attention than the “health and well-being of our players.” And he was supported by Rep. Lamar S. Smith (R.-Texas), who said, “We cannot legislate the elimination of injuries from the games without eliminating the games themselves.”

From the family caregiver side, Eleanor Perfetto, wife of Ralph Wenzel, a former player who is in a nursing home and is suffering from dementia, challenged the league to end its policy of denial. She was one of the wives denied admission to the December meeting. “That denial,” she said, “is disrespectful to the players and their suffering.”

None of the key players in the NFL’s study led by Dr. Casson were at the hearing.

Perhaps the most riveting testimony at the hearing came from Gay Culverhouse, a former president of the Tampa Bay Buccaneers. “What this committee has to understand,” she said, “is that the team doctor is hired by the coach and paid by the front office. This team doctor is not an advocate for the players. That doctor’s role is to get those players back on the field…If a player chooses independent medical counsel he is considered not a ‘team player.’ He becomes a pariah.”

From a player’s suffering to a wife’s anguish to a disputed study to a classic double-agent dilemma, this saga has more drama and certainly more twists than many of the football games themselves.

Published on: November 5, 2009
Published in: Bioethics, Clinical Trials and Human Subjects Research

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