The following article, written by Mount Holyoke College President and chair of the NEWMAC Presidents Council, Lynn Pasquerella, appeared in The Chronicle of Higher Education on July 16, 2012.
After Dale Lloyd II, a first-year student at Rice University, died following an intense football workout in 2006, it was discovered that he had sickle-cell trait, which placed him at increased risk during heavy physical activity. He is one of 21 NCAA athletes who have died unexpectedly following intense practices since 2000—10 of whom were found to have carried the trait. Lloyd's family filed suit against both Rice and the National Collegiate Athletic Association to make sure that no other students or families suffered similar tragedies.
People with sickle-cell trait have one of the two genes needed for sickle-cell anemia. Generally people with the trait have no medical problems, but the blood cells of some carriers can become sickle-shaped during extreme exercise, making it more difficult for the blood to deliver oxygen to organs and muscles.
As part of a settlement with the Lloyd family, the NCAA now requires sickle-cell testing of all Division I athletes, and beginning in August it will extend testing to Division II athletes. This response raises serious questions regarding the extent to which organizations are justified in protecting themselves against liability at the expense of individual privacy rights. These concerns are at the forefront of public discussion for those of us with Division III athletic programs, as the NCAA pushes to extend its requirements to cover our athletes, too.
The NCAA says testing for the trait will keep athletes safe by raising awareness among carriers of the trait and their coaches. Yet the fact that the organization allows an opt-out from testing if players sign a waiver protecting their colleges and universities from liability suggests that the policy's paternalism is more liability-driven than in the best interest of the athletes.
Players who fear stigmatization or discrimination may feel pressured into opting out, knowing that being treated differently on the field will automatically send a signal to teammates and scouts. Once a medical condition is revealed, there are further risks in terms of insurance, employment, and future athletic opportunities. The fact that 8 percent to 12 percent of blacks but only a very small percentage of people of other races carry the trait adds another dimension and raises the specter of a disparate impact on a group that has historically faced discrimination.
Some medical experts have said that the NCAA's policy is an experiment that will allow us to learn. However, experimenting at the possible expense of the rights of students is a lesson with too high a price. The fact that the screening now takes place without intervention or counseling places athletes at further risk of misinformation and undue psychological distress.
Instead of mandatory testing, the NCAA should consider a policy that changes the training protocol for all athletes and requires aggressive education about the warning signs of life-threatening overexertion. The advantage of such a policy, which has been adopted by the military, is that it protects not only those with sickle-cell trait but athletes who are at risk of other conditions linked to death following extreme workouts. This surely seems preferable to requiring EKG's or CAT scans to ward off future lawsuits based on undetected aneurisms or seizure disorders.
The NCAA's attempt to protect athletes is laudable, but the new policy has social and ethical consequences that may well override the benefits, especially when the benefits can be achieved using a less restrictive alternative.
Providing information to all athletes and their families about the value of testing and the signs of risk has advantages over mandatory testing. Yet whether or not the policy is changed, the NCAA's recent ruling forces us to consider how far we are willing to go as a society in response to liability-driven concerns.