( Apologies to my non medical readers but since 1st July was Doctors’ Day I am going with that theme for this month. Back to the usual random angst, observations and musings peppered with Bollywood songs from next month 🙂
Scientific enquiry and research is considered to be (kind of) the highest goal of rational progress to gather evidence to guide future decisions. No one would question it.
But what if the experiment is carried out on someone who does not understand the consequences or in fact has never been told what they could be? Or even worse– has been lied to and told that it will help? This is what happened in the Tuskegee trials. On May 16, 1997, President Bill Clinton issued a formal apology for the Tuskegee Syphilis Study, a notorious research project involving hundreds of poor African-American men that took place from 1932 to 1972 in Macon County, Alabama. The men in the study had syphilis, a sexually transmitted infection, but didn’t know it. Instead they were told they had “bad blood” and given placebos, even after the disease became treatable with penicillin in the 1940s.
In the mid-1960s, a venereal disease investigator in San Francisco named Peter Buxton found out about the Tuskegee study and expressed his concerns to his superiors that it was unethical. They formed a committee to review but ultimately opted to continue it, with the goal of tracking the participants until all had died, autopsies were performed and the project data could be analyzed. As a result, Buxton leaked the story to a reporter friend, who passed it on to her fellow reporter, Jean Heller of the Associated Press. Heller broke the story in July 1972, prompting public outrage and forcing the study to shut down. By that time, 28 participants had perished from syphilis, 100 more had passed away from related complications, at least 40 spouses had been diagnosed with it and the disease had been passed to 19 children at birth. http://www.history.com/news/the-infamous-40-year-tuskegee-study
The Nuremberg Trial
In 1946, 23 doctors were tried for the medical experiments and related crimes committed during the Holocaust. The tribunal focused on the criminal nature of these doctors, but also struggled with the broad ethical concerns of medical research.
The defendants claimed that they were working within the ethical bounds set forth by the Hippocratic oath, in the sense that they were seeking medical knowledge for the benefit of human kind. They had adopted a collectivist attitude- where medical orders were given on behalf of a fictitious collective.
However, the medical experiments were clearly horrific and unjustified and were in violation of human rights, and thus, a new code was developed in order to account for medical experimentation and research ethics. The testimonies from the trial were used in order to establish this new system of codes: the Nuremberg Code.
This code emphasizes the patients and gives guidelines and requirements for human experimentation. The primary purpose of the code was to provide an obligation to benefit the patient. This was a remarkable change from the Hippocratic oath, which emphasized that doctors determine the patients care, not the other way around.
The Nuremberg Code is one of the most important documents in the history of medical ethics and provides a new, clear understanding of what is expected in human experimentation in hopes that the atrocities of the Holocaust will never occur again.
There seems to be a TV series on the topic which I have not seen but has decent reviews if you want to check it out. http://www.imdb.com/title/tt0208629/
Of course there are some who oppose vaccination using the same argument and I will write on that sometime later.
A new dilemma emerges when considering whether the ‘data’ from such studies should be ever used? Holocaust survivor Susan Vigorito found the use of the word “data” a sterile term. She was 3 ½ when she and her twin sister, Hannah, arrived at Auschwitz. They were housed for an entire year in Mengele’s private lab in a wooden cage a yard and a half wide. Without anaesthetic, Mengele would repeatedly scrape at the bone tissue of one of her legs. Her sister died from repeated injections to her spinal column. She claims that she is the real data, the living data of Dr. Mengele. http://www.jlaw.com/Articles/NaziMedEx.html
If you find these ethical transgressions in the name of progress to be a fascinating subject and have never heard the word Neolution, nor seen the brilliant TV series Orphan Black I would recommend it very highly! It is totally worth your weekend or two….to binge watch the 5 seasons so far ! https://www.netflix.com/in/title/70276033
The Hippocratic Oath says First, Do No Harm.
But then he also says don’t do abortions , so clearly some re-think is needed. More on that later !