A brief history of ethics in human research: an interview with holocaust survivors

Prior to World War II, there weren’t any written codes for ethical standards for research that involved people. There were of course ethics, but physicians and experimenters had no formal guidelines – just ‘the vibe of the thing’.

If a scientist at an above-board institution wants to do an experiment with human participants, they first have to get their research proposal approved by a human research ethics committee (HREC). And I mean literally ANY research, from shampoo purchasing habits of teenagers to the classic Stanford prison experiment (which in hindsight probably isn’t the best example of ethical research).

Here is a list of other experiments you need HREC approval for:
– Getting participants to scratch themselves in front of a mirror
– Asking liars if they lie, and then deciding if their answers are lies
– Measuring how looking at an ‘ugly’ versus a ‘pretty’ painting whilst getting shot in the hand with a laser beam affects pain perception


“It’s the vibe of the thing” – pre-WWII research ethics in a nutshell

 

[Content warning: it gets real from here on]

 

How did we get to this point?

In 1933, Germany was in the midst of severe economic hardship. On the back of his campaign to make Germany great again by bringing Germans prosperity and the respect of the rest of the world (which they lost in World War I), the Germans elected Adolf Hitler as Chancellor. During his campaign, Adolf blamed the Jews for the Aryan race’s demise – among other things claiming we somehow controlled Germany like puppet masters. Once elected, Hitler and his Nazi party got to work implementing economic and social policies to persecute their Jewish citizens and others who were seen as enemies of the state. These policies grew increasingly oppressive and violent, culminating in the state-sanctioned murder of over 11 million people – including homosexuals, priests, the disabled, Roma gypsies, Jehovah’s Witnesses, and six million Jews. The majority of these murders happened in the gas chambers of purpose-built concentration camps during World War II (1939-1945). We refer to this entire event in Hebrew as HaShoah (השואה); the catastrophe.

 

Nazi medical experiments

My grandmother Stephanie and her sister Annetta are identical twins. To us, they are the grannies. Born in Czechoslovakia in 1924, they were just nine years old when Adolf Hitler came to power, and 14 when he invaded their homeland in 1938. Five years passed before they both were sent to Auschwitz-Birkenau, the largest of the extermination camps responsible for killing over 1.1 million people. During this time, countless experiments were carried out on camp inmates under the orders of Nazi SS doctor Josef Mengele (‘the angel of death’).

In any experiment, test subjects are divided into a control and experimental group. The experimental group is exposed to whatever it is you’re testing (e.g. Panadol), and then you can compare the effects between the groups to see if it actually did anything (e.g. pain relief). In this case for the results to be valid we have to be able to say that the differences in pain between the groups was caused only by the Panadol, and not differences in things like weight, height, or age. It’s no wonder then that identical twins are the ideal test subjects.

I can’t tell them apart, and neither can they
It’s a bit easier now… Stephanie (left) and Annetta

Tal: When were you singled out for research?

Annetta: When we first arrived in Auschwitz, Mengele was already looking for twins. When we came from the train they were calling ‘Twins out, twins out’. What he did with other people we only found out later. Mengele took us personally to his laboratory in the Gypsy camp where he did the examination; matching the hair colour, and eye colour and other things to see if we were really identical. And then, after some time, we were given blood transfusion from other identical twins living in the camp.

Stephanie: It was actually not him [who did it], somebody else was doing it on his order. It was very primitive.

A: It was very badly taken [by us], we were very sick, we thought we will die. We didn’t actually know why it was done. Actually, the day after we were sent back from his laboratory we found out the entire Gypsy camp was liquidated. After [the war] we found out that he wanted to impregnate us by twins, to know whether twin parents will have twin babies. He wanted to increase the birth-rate of the German nation. He didn’t get to it because the Russians were coming closer, and we were all sent on a death march to another camp.

T: Were you ever asked for your consent or your input?

S: They didn’t ask us anything. We didn’t know what was going on.

A: People were under very very bad circumstances…. Guinea pigs.

T: What were your first impressions of Mengele?

S: He looked well. He didn’t look anything special. I actually thought he was pleasant because he didn’t shout at us [as the other officers did]. He wasn’t bad looking. He had a little gap between his teeth. Yes, he was not bad looking or behaving as far as we saw.

T: What were the experiments for?

A: They were horrible things which were done. People were starved [to see how long they could survive without food], they sewed two little babies like Siamese twins to know how long they will live. Our friend was not allowed to feed her baby who was born [in the camp] because He wanted to know how long the baby would survive without food. Luckily some Czech doctor gave her an injection or whatever, and she killed her own baby so it would not suffer.

S: One twin was injected with Typhoid, and the other wasn’t. When the sick one died, the other was also killed with an injection in the heart. They wanted to see what differences there were in the organs.

I don’t have the room here to list all of the experiments that were carried out, but they had two main goals: the first was to aid German soldiers suffering from things like starvation, hypothermia, mustard gas exposure and phosphorous burns, or needing operations like organ transplants, blood transfusions and bone transplants. The second aim was to boost Germany’s Aryan population. Some experiments seemed not to have any greater aim:

T: Were they only interested in identical twins?

A: There were many twins. But one person who I met [after the war] had a brother, who was not his twin but [the Nazis] thought they were. One was singing nicely and the other one didn’t have the voice. And they operated. One died, and the other who survived couldn’t talk.

T: Who else was doing the experiments?

A: Mengele was in charge, but he had many doctors who were under his command and they had to do the autopsies and things like that. When for example when one of the twins was killed [in an experiment] they killed the other one to see what’s going on. They were Jewish doctors.

T: Did it seem like the doctors were hesitant to do what Mengele wanted?

A: You have to do it, because if you didn’t do it he would find someone else and you would be sent to the gas [chambers]. Everyone was under his command and pressure. He was talking about everything from the point of research. He didn’t see that the people suffer, even when he killed them with injection to the heart.

T: From the 50s to the 80s, scientists were referencing results from Nazi medical experiments in their studies on hypothermia. How do you feel about scientists using the information later?

A: I am not against it that they are using the research. The knowledge has to be used. What came out of those experiments may have helped [treating people], only it was not humanely done.

 

I can’t find an exact amount, but around 3000 twins were used in Nazi experiments, and only some 200 survived. My grannies, now 92, are two of them.

The Nazi medical experiments are obviously the antithesis of ethical conduct, and whilst I don’t doubt that pre-WWII research was conducted on much better terms, gross misconduct was still common. The Nazi experiments served as a wake-up call to the world that guidelines and regulations need to be in place in order to ensure that research participants’ well-being always comes first.

 

The trials at Nuremberg

Immediately following the end of WWII, a series of trials were held in Nuremberg, Germany, to bring Nazi war criminals to justice. As a result of the “Doctors’ trial” (officially United States of America v. Karl Brandt, et al.) a set of research ethics principles concerning human experimentation titled the Nuremberg Code was established. Although not legally binding, the document is considered to have been the foundation of the World Medical Association’s 1964 Helsinki Deceleration.

In turn, this prompted Australia’s National Health and Medical Research Council (NHMRC) to issue its Statement on Human Experimentation in 1966, and similar actions were taken by other countries.

 

And finally, this brings us to today’s regulations

Taken from the NHMRC Australian Clinical Trials website:

The National Statement requires that, before granting approval to a clinical trial, a Human Research Ethics Committee (HREC) must be satisfied that the protocol conforms to:

  • the National Statement
  • the World Medical Association Declaration of Helsinki
  • where relevant, the CPMP/ICH Note for Guidance on Good Clinical Practice (CPMP/ICH-135/95), the ISO 14155 Clinical Investigation of Medical Devices and the requirements of the TGA
  • any requirements of relevant Commonwealth or state/territory laws.

 

For those of you making it to the end, I hope it has been an insightful read. I’m afraid that I’ve only glossed over a small section of very important history; I found myself wanting to go on a hundred tangents while writing this piece but held back. This blog could not possibly encompass the entire history of WWII, but I urge you to read further if you aren’t well acquainted with it; what we as humans are capable of doing is deeply disturbing, and there are many lessons we can learn from it.

 

Want to know more?

  • – An article on whether it’s ethical to use data from the Nazi experiments
  • – Watch my grandmother’s video testimony
  • – If you’re in Melbourne, go to the Jewish Holocaust Centre in Elsternwick
  • The Spinoza Problem – Irvin Yalom
    Irvin Yalom is a Jewish-American psychotherapist and an incredible writer. He draws on his professional knowledge and experiences, and combines history and fiction to bring real historical figures alive – all based largely on known information about them. He makes deep philosophical theory understandable and relatable to everyone, and I highly recommend all of his books, especially When Nietzsche Wept and Love’s Executioner.
  • – The Jewish Virtual Library’s holocaust section

One Response to “A brief history of ethics in human research: an interview with holocaust survivors”

  1. Stuart says:

    Thank you for sharing something this personal.