In it, she relates the story of American experiments on blacks, from Dr. Sims using a black woman with a birth injury as a guinea pig to develop a way to repair this terrible injury (due to her poor nutrition, the operation had to be redone over and over again, without anesthesia that was available at the time).
She also reminds us of the Tuskegee study, where black men with syphillis were denied a shot of penicillin; at the start of the study, it was uncertain if penicillin cured syphillis and prevented late complications, but the study continued for twenty years after it was known that penicillin did indeed cure the disease.
The long term side effect of this study was to make the black community suspicious of the white medical establishment.
A more modern version of this can be found in the Nigerian study of a new antibiotic to cure meningitis. At the time, there were other antibiotics that cured meningococcal meningitis, and even treated meningitis has a high rate of complications and death, but it is now recognized that consent was lacking and that the children were guinea pigs for a rich US drug company.
The long term effect of this study is found in the present day polio epidemic, where parents and religious leaders refuse the vaccine.
Nor is this type of experiment limited to poor blacks, as the little known Red Lake Nephritis experiment in the 1960′s shows. Although it was known that the local strep germ causing impetigo had a high rate of kidney complications, (acute post streptococcal glomerulonephristis), and although it was known that the epidemic was stopped in the 1950′s by essentially checking everyone and treating mild cases, in the mid 1960′s a doctor from University of Minnesota decided only to treat those who came in. Thirty years later, we had two people on dialysis from kidney disease caused by that study.
Another study that was not racial but resulted in the deaths of mainly minority children dying was the notorious Oklahoma City study where children with spina bifida were triaged into treatment and non treatment groups, according to a quality of life criteria…and it wasn’t until years later that a black doctor discovered most of the dead children were minorities, since one of the criteria used to justify non treatment was poverty.
But we are so much more humane now. Children with spina bifida are aborted before they are born, often by late term abortion.
In the Netherlands they are granted euthanasia, which the NYTimes applauds without asking the obvious questions: if 7% of those living in the Netherlands are Muslim,Â and if 40% of those living in Amsterdam and 16 % of children, are non Dutch in ethnicity, do these ethnic parents agree with the infanticide practiced in Dutch hospitals, or do they, like the black parents in Oklahoma, think that their children are receiving the best treatment available, and unaware that their lives could be saved?
But ethics bias against the sick is not limited to the start of life. Few except rabid pro lifers worry about the Texas law on futile care, where self selected ethics committees can go against family and patient’s wishes if they think the care won’t work.
Then there is the racial angle on some present day studies that are being done in inner city hospitals.
What was the race of patients in two Detroit hospitals who were given experimental artificial blood without consent? The study was stopped when the artificial blood was found to cause heart attacks. Most of the patients involved were from motor vehicle accidents or gunshot wounds.
Or this study on resusitation, where unless you are wearing a stainless steel bracelet saying you opt out, you could be triaged into known treatment or experimental treatment study.
Or this study, where children in prolonged seizures will be given one of two treatments to see which one works to stop their seizures, without the consent of their parents. Children’s Hospital of Philadelphia is in the inner city, so if you are convulsing in the posh suburbs your child won’t be taken there.
So ethical problems in medicine continue, and those who will be most harmed are not the sophisticated upper middle class who will have the nerve to say no, or whose care will be given in posh suburban hospitals, but to the poor who are already intimidated by authority, and who will agree to that authority’s advice.
Traditionally, studies that do not even allow such consent are unethical..
Too often, bioethics is merely a way to explain why someone should be able to do an experiment rather than to warn about not crossing boundaries. And in the face of a smooth talking ethical community, sometimes it seems like the only nay sayer is Arthur Caplan, who reminded those defending the epilepsy study that they need to consider the parents.
But Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania in Philadelphia, says emergency physicians and researchers may face “skepticism if not outright hostility” when parents learn that “something was done without consent.”
Yup. People get pissed off at being deceived and experimented on. Even if they are poor blacks from West Philly.