The basis of ethics is easy enough to understand – ‘do the right thing’. However in research ethics the conundrum is often, the right thing for whom?
It is this question that is the crux of many ethics questions in research.
What is right for science, the researcher, society, and the participant may not always be the same thing. In fact, often they are very different. It is the role of Research Ethics Committees to resolves these tensions, and make sure that the founding principles in research ethics are adhered to.
The topic of research ethics appears regularly in popular culture, albeit in disguise. The popular myth of the ‘mad’ research scientist, or horror narratives reveal duality of the cultural fascination and fear of science and experiments.
The idea that scientists are pushing at the boundaries of nature has been long lived.
Whilst some popular portrayals of scientists focus on the hapless, but benign nature of the ‘mad’ scientist (think Dr Emmett Brown in Back to the Future), others are more sinister. The legend of the ‘bad’ scientist is explored in a number of genres, from traditional gothic horror genres, such as Frankenstein, through popular portrayals such as Dr Evil, to the futuristic works of Michael Crichton, the ‘evil genius’ of science and medicine is evident.
Although such works are obviously fiction, they reveal a deeper cultural concern. The overreaching of humans, the quest for knowledge regardless of cost, and the uneasiness of power unchecked all feature in such accounts.
The same themes could be said to be true for the true horror stories of medicine and science which lead to the emergence and international recognition of the importance of research ethics.
There are horrific historical examples of research without ethics. A well-known example is the Nazi experiments revealed in the Nuremburg Doctors’ Trial. A perhaps lesser known one is the Tuskegee Syphilis Study, during which hundreds of low income, African-American men were infected with syphilis without consent by the US Public Health Service and monitored without treatment between 1930s and 1970s.
These atrocities highlighted the need for international codes for ethics and lead to The Nuremburg Code (which highlight the importance of informed consent), The Declaration of Helsinki (which internationally governs healthcare research and is the basis for Good Clinical Practice) and The Belmont Report (which tried to summarise basic ethical principles).
The requirement of these ethical conventions is in recognition of the fact that all research has inherent risk. It is therefore the role of the Ethics Committee to represent the interests of patients and the public when considering research.
They ask important questions such as who does this research benefit? What potential harms could participants face? How can any such harms be minimised?
Conducting ethical research should not just be a onetime check, but a constant iterative process. The Ethics Committee play an important role in this process, raising the issues that are likely to be most important to those who will be shouldering the risk – the patients and public. Therefore an Ethics Committee is not a hoop through which researchers jump, but rather a valuable process in which a research project is interrogated and made stronger for it.
Despite what popular culture tells us, excellent science is not produced by individuals with a dangerous thirst for knowledge and few social skills, designing experiments which disregard humanity. Instead the best science happens in groups when ideas are discussed. To paraphrase the wonderful Tim Minchin:
“There is great wisdom in the famous bon mot that says:
“Ideas are like [insert rude word here] in that everyone has them”
However ideas differ from [insert rude word here] too in that yours should be constantly and thoroughly examined.”
This is what a great ethics process should provide - constant and thorough examination.
- Dr Becky Rowley
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