Anyone who has ever tried to conduct medical research will be familiar with the workings of the ethical committee, an institution appointed arbiter of what research is or is not acceptable. Pretty much all institutions that conduct medical research have an ethics board. For the most part this makes sense – it is there to protect subjects in clinical trials from unnecessary dangers, whether physical or psychological.
On the whole, ethics committees are effective and give researchers the opportunity to reflect on their work and, in many cases, to improve upon the experimental design. The committee seeks to protect individuals from ill considered experimental protocols. It is the ethics committee that decides whether a given study can get by with a single lumbar puncture rather than the half-dozen proposed by the investigators. This is an extreme example but you get my drift. In essence, their role is protective.
In extremis, the ethics committee has the power to block the research from taking place at all where there are seen to be avoidable risks to the patient or where the scientific benefits do not outweigh potential dangers to the patient. On the whole, ethics committees are on the side of the patient rather than the experimenter.
But what if the patient IS the experimenter? What if a patient wishes to conduct research using themselves as the subject? What does the ethics committee do under these circumstances? Does it attempt to protect the patient from themselves, vetoing such investigations? And if so, under what authority does it presume to act?
The medical literature is full of examples of scientist physicians experimenting upon themselves. Take for instance Sir Henry Head FRS, whose pioneering work on sensory nerve reinnervation was based largely on the results of severing the radial and external cutaneous nerves in his own arm. Yet no ethics committee on earth would allow him to conduct such experimentation on others. So Head simply did the work himself and, in doing so, significantly advanced the field of research.
In the case of Werner Forssmann, he sought ethics committee approval for his work first and was refused. Undeterred, he proceeded anyway with his work on cardiac catheterisation, being dismissed from his job on more than one occasion. Perseverance eventually saw him awarded the Nobel Prize for medicine in 1956.
You might feel that these occurrences are historic and, in the light of these, that modern day ethics committees recognise the right of individuals to experiment upon themselves. You would be wrong.
A friend of mine has been working in the field of self-monitoring and self tracking in Parkinson’s disease for some years. Her work has been widely reported and she is a strong advocate for the role of patients in self-care for chronic illness. Not surprisingly, her work has involved an element of self experimentation and some of this work has been published in peer-reviewed journals.
She is currently writing up a doctoral thesis and includes some work on self experimentation. This is a significant piece of work and a validation of the entire spectrum of self-care. There are many in the field who look forward to the dissemination of this work and its submission as a doctoral thesis. The work will be a credit to the institution where it was conducted.
Hard to believe then but the candidates host institution has denied her the right to submit her thesis for examination based on this work. The institution has taken the view that those papers based on self experimentation are inadmissible because the candidate did not seek ethics committee approval. That’s right – although these papers have been published, following peer-review, in reputable scientific/medical journals, the institution still feels that the work is ethically unacceptable.
This is extraordinarily backward thinking. A return to the old patrician days of medicine and a vote for scientific censorship of the worst kind. If this was a new institution, finding its way in the moral maze of medicine their attempted action might be comprehensible. But the Institute in question is more than 200 years old. They should know better.
It is increasingly recognised that patients are an essential part of the research process and that their perceptions of needs should be prioritised. And where patients are winning battles for control of their own data, assessment and treatment, this action is a timely reminder that some institutions seem determined to be forever dinosaurs.