Should high school athletes and prospective military personnel be genetically tested to determine if they are at increased risk for dementia caused by repeated head injuries? The dean of the University of Virginia School of Medicine and the director of Mount Sinai’s NFL Neurological Program are asking that question – and offering recommendations to clarify the ethical issues that accompany it.
The long-term effects of traumatic brain injury [TBI] have been spotlighted by the high-profile suicides of former NFL players Junior Seau and Dave Duerson. Increasing evidence suggests that repeated head injuries, whether from sports or the battlefield, can lead to dementia in later life. But genetics play an important role as well, potentially increasing the risk for late-life dementia more than 10 fold.
That has prompted Steven T. DeKosky, MD , vice president and dean of UVA’s School of Medicine, and Sam Gandy, MD , the chair in Alzheimer’s research at the Mount Sinai School of Medicine , to examine whether genetic testing could help avert dementia and reduce the costs of dementia care – a figure estimated to top $1 trillion annually by 2050.
Key information missing
In a new editorial in the journal Science Translational Medicine , DeKosky and Gandy note there is a lack of vital information on which to base a decision on the value of such genetic testing. They conducted an informal poll of experts in Alzheimer’s disease, TBI and related areas, and they found a significant majority of the 45 respondents agreed that it was premature to introduce genetic testing into schools or the military. What is needed, DeKosky and Gandy conclude, is additional information to evaluate the usefulness of such testing.
Finding solutions
One approach to collecting the necessary data, they suggest, would be to set up a network of research centers. This would allow for the collection of data from an array of subjects, including high-risk adolescents exposed to brain injuries through sports. The information could then be used to create predictive mathematical models.
DeKosky and Gandy also suggest that valuable data could be drawn from studies now being assembled, such as the National Institute of Child Health and Development Vanguard Study, which plans to track major life events of 100,000 children until their 21st birthdays.
Ethical and psychological issues
DeKosky and Gandy note that there are both ethical and psychological complexities to the question of genetic testing. “There is a very real concern about the effect of genotype information on family members and on personal employability and insurability,” they write. “In addition, recruiting high school-age subjects for … genotyping and follow-up could be controversial as parental informed consent would be required, necessitating pre-test genetic counseling for adolescents and their parents.”
Conclusion: An idea worth considering
Despite such concerns, DeKosky and Gandy conclude that considering genetic testing for high school athletes and the military “is, without a doubt, a worthwhile challenge.”
“If lifestyle modifications for [those at genetic risk] – such as avoiding high-impact sports or opting for military careers that do not put the brain at risk – can reduce dementia prevalence in 2050 by even 1%,” they write, “we would gain an annual savings of $10 billion in costs of care – and immeasurable savings in terms of human suffering.”
