Skip to 0 minutes and 17 seconds Having looked at the principles that inform biomedical ethics and some of the guidelines that inform ethical research practice, it’s worth reminding ourselves of the importance of sticking to these principles. History provides us with some salutary lessons about what can go wrong if we don’t have a regard for what we are doing to our fellow humans in the name of science. Most notorious is Dr Josef Mengele who conducted a series of experiments in the Nazi concentration camps at Birkenau and Auschwitz which had no regard for the suffering of the unwilling participants.
Skip to 0 minutes and 51 seconds His use of twins in experimental conditions to inflict terrible suffering in order to assess pain tolerance and response to various illnesses was apparently conducted without any remorse for the pain, suffering and death he inflicted. Mengele escaped after the war and died in South America several years later, still protesting that his work had value. The story of one of the surviving pairs of twins, Ava and Miriam Moses, is a haunting reminder of the human cost of this terrible episode in research history. Unlike Dr Mengele, many Nazi war criminals were tried for war crimes at the Nuremberg Trials.
Skip to 1 minute and 32 seconds As a result of the testimony of many people during these Trials, a set of ethical principles were developed as a guideline for future healthcare researchers. These spell out some very basic concepts, but are also the first time that the concept of informed consent was introduced, a concept which has been refined since. It’s important to note that actually these guidelines, however basic and obvious they seem to us now, actually took some time to gain any traction and they’ve never been enshrined in law in any country. What did follow, however, was the Declaration of Helsinki by the World Health Organisation, originally developed in 1975, it’s now in its seventh revision and has continued to refine ethical principles in relation to research.
Skip to 2 minutes and 20 seconds The Helsinki Declaration is credited with the ending of another experiment which we would now see as deeply immoral, the Tuskegee syphilis experiment which ran in the American State of Alabama between 1932 and 1972. As part of a public health programme, a large cohort of African-American men were recruited to study the effects of syphilis. Whilst promised free healthcare, the subjects were not told that in fact they were not being treated for syphilis but the progress of the disease was being studied in the group. Even after an effective treatment in the form of penicillin was found, they were not offered the option of medication and what started as a six-month study, eventually lasted 40 years.
Skip to 3 minutes and 5 seconds During the course of this experiment, not only did a number of the subjects die unnecessarily, but 40 wives caught the disease and 19 children were born with congenital syphilis as a result. Ironically, it was also a result of Nazi behaviour that the Milgram Experiments were conducted at Yale University in the USA by psychologist Stanley Milgram. Fascinated by what made ostensibly good people do bad things during the Second World War, he set up some tests to see if compliance to authority could be replicated in laboratory conditions. This involved telling people to shock unseen subjects with increasingly large jolts of electricity.
Skip to 3 minutes and 45 seconds Milgram found that even when the subjects could hear screaming from the next room, they continued to administer the shocks in order to comply with researchers’ demands, that they didn’t spoil the experiment by not continuing. In this case, Milgram was only simulating the electronic shocks. No one was actually being hurt, but the subjects didn’t know this. So, while ethical experimentation was evolving, informed consent was hardly applicable in this case and the amount of deceit used is morally dubious at best.
Skip to 4 minutes and 17 seconds Likewise, in the early 70s, at Stanford University in the USA, another experiment on similar lines tested how ordinary people responded to being given complete authority over another group of people. After volunteers were assigned as prisoners and half as prison guards, but again, some deception was used to increase the perceived reality of the situation. Over the course of the next six days, the guards acted in an increasingly brutal manner towards their charges until the experiment had to be finally called off.
Skip to 4 minutes and 50 seconds In part, the outcry that followed this particular experiment is what led to the development of systems within university and healthcare systems of ethical review committees which look at research designs for ethical issues before the research is started in order to safeguard participants. So, whilst we now have much better systems for safeguarding subjects and participants of research, and ensuring that research is conducted in an ethical manner, we shouldn’t become complacent. Sometimes things still slip through the net. The world-famous Alder Hey Children’s Hospital in Liverpool, for example, caused controversy by retaining the organs of deceased children for scientific purposes when parents had not given express permission for this to happen. This was only discovered in 1999.
Skip to 5 minutes and 39 seconds And in a final twist and by way of showing that the same standards of ethical behaviour did not necessarily apply in other areas of public life, the illusionist Darren Brown recreated a variation of the Milgram experiments in 2006 for a TV show, The Heist, in which he managed to manipulate volunteers into conducting an armed robbery. So, although our systems of seeking ethical permission to conduct healthcare research may at times seem bureaucratic, there are good reasons why we put in these safeguards. If we seek to practice ethically, we must also seek to research in an ethical manner.
Examples of unethical practice
In this section we look at the principles of ethics, unethical practice and the need for ethical governance.
Listen to Dr Laurence Baldwin give a brief overview of some of the most unethical research conducted in the last 100 years and how, slowly, these experiments have led to the idea of ethics that we take for granted today.
He talks about how the Declaration of Helsinki came about, how it ended an unethical experiment that had run for 40 years and how the idea of informed consent is not as old as we think it might be.
These processes are not infallible, however, and Laurence gives an example from the UK of recent unethical research carried out at a hospital.
Finally, he discusses how the same standards of ethical practice do not apply to all areas of public life. He gives the example of Derren Brown’s creation of a variation of the Milgram experiments for television, illustrating that there are still very good reasons for the necessity of safeguards.
With better systems in place it is easier to assume we will avoid unethical practices. After all, who suspects they will cause harm by conducting an interview or a survey? However, a small mistake can still lead to an ethical failure.
Can you think of ways in which a minor oversight could lead to an ethical breach?
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