Professor Janet Melville-Wiseman reflects on lessons learnt that have helped to shape our code of ethics for research.

As we celebrate the end of World War II in Europe, we reflect on how the victory led to the end of the conflict but also the liberation of people incarcerated in the horrific concentration camps spread across Nazi occupied Europe. 

Ten years ago, I presented a paper on the abuse of vulnerable people in mental health services at the Human Rights, Violence and Dictatorship International Interdisciplinary Conference in Krakow, Poland.  Following the conference, I took the opportunity to visit Auschwitz and Auschwitz-Birkenau. Auschwitz is the Germanised name for the small town of Oświęcim in Southern Poland where two death camps were located. 

I anticipated seeing photos of people murdered there and to stand in the gas chamber where they were deceived and trapped into walking to their horrific deaths. However, I did not anticipate learning more about the horrific medical experiments that were carried out there without consent or any other medical safety measures in place. 

During this time the Nazi regime preyed on innocent captives to conduct experiments in the name of so-called scientific research. In Auschwitz the now notorious highly trained physician and medical scientist Josef Mengele conducted experiments to attempt to prove the racial superiority of the Nazis. These experiments were often designed in the full knowledge that the experiments would lead to the painful death of their human subjects. All of this was in breach of the physician Hippocratic Oath whose main proscription was ‘first do no harm’.

The liberation of those camps and the discovery of those horrific experiments were a key part of lessons learnt in the aftermath of Victory in Europe.

The World Medical Association was formed in 1948 and quickly established the Declaration of Geneva which provided the medical profession with the first International Code of Medical Ethics. It remains almost as it was first written and is often described as a modern Hippocratic Oath. This was followed by the 1964 Declaration of Helsinki which continues to provide the global research community with the fundamental ethical principles to guide medical and related research. 

Today, it is a requirement for all research involving human subjects to go through ethical approval before it can commence. This means that the project is subject to independent scrutiny of its approach, its design, and the potential risks and benefits for participants. The threshold for approval is particularly high to include vulnerable participants such as those who may not have capacity to consent to participate. It is also unlikely that a funded study would gain ethical approval today if patients, service users and the public have not been involved in the design of the study. Recent UK legislation means that for the first time clinical trials and their results summaries must be available on a WHO recognised public register.

Gaining ethical approval can be annoyingly time consuming. However, it remains a fundamental principle to ensure that only safe research is undertaken with not on human subjects even if we think that science may progress faster without it. It also confirms that we honour the lessons learnt from the past.

Janet Melville-Wiseman is Professor of Social Work and an Expert Panel Member for the Health Research Authority Social Care Research Ethics Committee.