College athletics’ bid to identify sickle-cell carriers: Not ready for prime time?
An initiative launched by the National Human Genome Research Institute and a leading pediatrician have warned.to screen close to 167,000 college athletes for “sickle cell trait” is “full of potential pitfalls” and should be recast before taking effect, two experts from the
The NCAA program -- the first large-scale effort to use genetic information to reduce injuries -- is likely to be a model for future initiatives. But in its current form, it represents a poor example for others to follow, the trio wrote in a New England Journal of Medicine commentary published Wednesday.
Starting this academic year, the NCAA is testing all students participating in athletics at Division I schools for the gene responsible for. The program aims to identify carriers of a single sickle-cell gene--not those who carry two such genes, and have sickle-cell disease. Those who inherit sickle-cell genes from both parents will have sickle-cell anemia, a chronic and painful disease in which red blood cells fail to carry oxygen efficiently to muscles and organs. But those who carry a single gene have no outward symptoms of the genetic affliction, which overwhelmingly affects those of African descent.
Such carriers do, however, have unusual vulnerabilities, including some that are distinctly relevant to athletics: they are more prone than those without the sickle-cell gene to develop a potentially deadly muscle-wasting condition called rhabdomyolisis after intense physical exertion, as well blockages in blood vessels carrying oxygen to the spleen (especially when exercising at high altitudes). Eight percent of African-Americans carry at least a single sickle-cell gene (rates among Latinos and white Americans are .08% and .02% respectively). The NCAA screen is expected to identify 400 to 500 carriers each year.
What happens once an athlete is identified as a carrier is not spelled out in the NCAA playbook, write attorney Vence L. Bonham and scientist Lawrence C. Brody of the Genome Research Institute and Hopkins pediatrician George Dover. The group notes that the NCAA has failed to put in place measures that protect athletes identified as carriers from stigma or discrimination within their programs, or that provide them counseling on what their status means (and does not mean) and how they might protect themselves from the risks that come with it.
They add that since the tests take place outside of a patient-physician relationship, athletes do not have assurances of confidentiality. For students on athletic scholarships, such testing could be viewed as coercive, they note. And they ask why the program appears limited only to Division I schools. “Are athletes in NCAA Divisions II and III at less risk, and if not, why are they exempt from testing?” they ask.
The program “may be an enlightened first step toward ensuring the health and well-being of student athletes,” the commentators grant. But there are also signs that it was “designed primarily as a defensive legal measure” to protect Division I schools from liability. The program was initiated after a 19-year-old Rice University football player with sickle- cell trait died during a 2006 practice, prompting a lawsuit from his parents.
A growing number of tests -- medical and genetic -- are becoming available to identify persons at particular risk of disease or injury. (For instance, the U.S. military isto identify genetic profiles that convey a heightened vulnerability to the effects of brain trauma). As employers and league officials embrace those tests to protect themselves and their members, they may look to the NCAA’s new initiative. But the authors caution that “perhaps [the NCAA initiative] is best viewed as an experiment” -- not a model -- that can help guide future programs.
-- Melissa Healy/Los Angeles Times