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the New York Times recently conducted a major investigation revealing the use of the sickle cell trait (SCT) to conceal the deaths of blacks from the hands of the police while in police custody. The newspaper reported that it had found 47 cases over the past 25 years in which forensic pathologists, law enforcement officials or advocates for accused officers cited the trait as a major cause or factor in the death of a woman. black person in custody, 15 of these deaths having occurred since 2015. As hematologists specializing in both SCT and sickle cell disease, we appreciate the importance of highlighting the troubling information uncovered by this investigation, including attributions of the SCT as a causal factor in the deaths of individuals who have been “brutalized” by the police.
TBS is a benign genetic disease; it is not a disease and is not associated with decreased life expectancy like sickle cell anemia. TBS does not cause “sickle cell crisis”, “cardiac enlargement” or “positional asphyxia”, which have been cited in several cases. In the seminal work published by Graham Serjeant, Sickle cell anemia (third edition), the author notes that in people with SCT, “morbidity studies have also shown no difference in age, duration or pattern of hospital admissions in the [people with] TBS versus normal controls. TBS is also extremely common; it is estimated that three million Americans and hundreds of millions of people worldwide have TSS, and most will live a normal lifespan without any adverse events related to TSS.
Sudden death cases in people with TSS are the exception rather than the rule. Previous reports of these cases have taken place as part of extraordinary efforts, such as older formats of military base training and intensive athletic conditioning. A recent study published in the New England Journal of Medicine including data from more than 47,000 black soldiers in the United States Army from 2011 to 2014, revealed that there were no increased risk of sudden death in soldiers with SCT compared to those without SCT.
In people with TSS, there is a well-known risk of exercise rhabdomyolysis, a condition of severe muscle breakdown that can lead to kidney failure, although NEJM The study found that this risk was not greater than the risk of rhabdomyolysis associated with obesity, smoking or using statins. On the contrary, several studies have shown that people with TSS are able to tolerate moderate exercise and show no clear differences in metabolic degradation products, oxygen exchange, or cardiopulmonary function.
In light of solid scientific research and expert hematologist advice, it is clear that CTS is not associated with an increased risk of sudden death. The American Society of Hematology, the world’s largest hematology society, which has renowned experts in sickle cell disease among its members, recently published an reply at Time investigation, claiming that there is no medical merit in the CTS to explain the deaths in custody.
It’s also clear that black men who interact with police have a significantly increased risk of death. A report published by the National Academy of Sciences in 2019 estimates that one in 1,000 black men are killed by police. Black men are 2.5 times more likely to be killed by police in their lifetime than white men. Unfortunately, official data on the number of deaths in police custody is not available, despite the adoption of the Law on the declaration of deaths in custody in 2014.
In cases reported by the Time, statistics are not necessary to highlight the police’s blatant brutality and disregard for human life and safety. In many reported cases, police deployed stun guns and tasers, pursued men who rightly feared for their lives, knelt on their necks, and beat people with batons. In some cases, we will never know the true nature of their brutality, as the abuse was inflicted under cover of a forest at night, or with body cameras turned off or with hidden images.
The medical field itself has a shame the story to create and perpetuate the pseudoscience of physiological differences based on race and to conduct unethical research. It is therefore incumbent on us as doctors to publicly denounce the use of these outdated and racist notions when used to cover up the mistreatment and murder of black men and women at the hands of the police. We must not allow those who would like to hide the fact that these men very likely died as a result of excessive use of force.
Forensic pathologists determine the way and cause of death. We must demand that these medical examiners stop perpetuating misinformation about TBS; it is neither a contributor nor a cause of death in almost all of these cases. We call on forensic scientists to assess their own biases and conflicts of interest and to stop the misuse of medicine and science to potentially exonerate the police in the racist brutality of black men. To be clear, reducing stigma and eliminating the medical mythology of forensic examiners of deaths of black men in custody is a critical part of holding police to account.
Following the first anniversary of George Floyd’s murder, this accusation is more urgent than ever. President Joe Biden called on Congress to pass the HR 7120 George Floyd Justice in Police Act. He is currently stuck in the Senate and we must appeal to our congress members to act by passing this bill. As Americans, we should all wish for better police with increased accountability, including police encounters with other Americans with TBS.
Blaming the deaths of 47 black men on TBS as causal rather than associated is inaccurate and disrespectful. It is clear that this was not a variant of the beta-hemoglobin gene (HBB), but rather the melanin receptor gene (MCR1), which was the cause of the death of these men. Put simply, the genetic trait that most contributed to the deaths of these men was obviously the color of their skin, not the content of their red blood cells.
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