Personal Views: My disappointment with an ethics committee
Authors: Siao Pei Tan
Journal: BMJ (2004)

Four years ago my grandmother had a stroke. When my grandfather found out he took it very badly and had a major stroke himself. The doctors had to perform emergency surgery, but he could not give his consent because of his illness. It saved his life but left him severely disabled: unable to speak, bedridden, and paralysed for eight months before he died. Was the surgery a mistake? Knowing that the surgery carried such risk, would he have wanted it?

When I was a fourth year medical student I got the opportunity to study a topic I am passionate about: the factors that affect someone's desire for active medical intervention. I intended to describe to the research participants a stroke scenario very similar to my grandfather's and ask them would they have wanted the surgery if they were a member of the victim's family or if they themselves had had the stroke. I would then relate the participants' characteristics, such as age, social support, perception of health status, and social and financial background, to their answers. Perhaps knowing such factors might help in guessing the wishes of someone who, like my grandfather, couldn't give consent.


The different committees seemed to have different concerns


The main hurdle was to obtain approval from the ethics committee. Filling in the 57 pages of the form proved harder than I imagined. My first application was rejected. I had intended questioning inpatients, including terminally ill patients as long as they were not acutely ill and consented to the study, but the committee said I should study people in a less acute setting. Other comments from the committee concerned my failure to include participants whose first language was not English and my aim to recruit 200 participants, which they thought ambitious.

I know I was inexperienced and that my application had flaws. However, is it reasonable for the committee to ask that I provide translation and interpreters? I made it clear that this was part of my medical course and I had to do this on my own (under supervision, of course). I did not think that targeting 200 participants was ambitious; it was just a target. Including people whose first language is not English, however, was too much for a one-student project. I didn't realise that a committee that is supposed to look at ethical aspects considered sample size as well. The committee members judged, simply from my application form, that I could not manage 200 patients. I was told to make the necessary changes and submit a new application.

Undeterred, I sent in two further applications. Application number two aimed to recruit patients over 60 years old in day hospitals—patients who are not usually acutely ill. I reduced my sample size to 50 and said I would use the services of the hospital translator. As a safety net I sent in application number three, intending to recruit hospital visitors above the age of 60, just in case the committee thought that day hospital candidates were too frail.

This time a different set of committee members reviewed my applications, both of which were rejected. This committee had new concerns. They said that these people, even the visitors, were too frail. They thought that a mini-mental state examination and the line of questioning I proposed could cause distress. I pointed out that this happens all the time in the wards and that I would be consulting the staff caring for the patients, who would tell me if certain patients were not suitable to talk to.

I then asked the committee whether they would approve research on healthy 20 year olds. To my surprise the answer was no. All along I had been told that the main stumbling block was my choice of patients. If these youngsters are considered frail, are there any healthy people on whom I can conduct a mini-mental state examination?

I was told that the aim of the course I was doing was for me to learn how to conduct research and that students should avoid sensitive issues. It seemed that the ethics committee had taken over the role of the university in defining my course's learning objectives.

It seemed unfair that my second and third applications were reviewed by a totally different committee. The different committees seemed to have different concerns. I attended all the meetings but was not involved in their discussion. I had to wait until they reached their conclusion, then I was brought into their room and was told about their decision. Could I not be allowed to defend my project?

It is paradoxical that a project that intended to help doctors provide the care that patients want should be rejected by the ethics committee. It is patronising to suggest that elderly people cannot cope with thoughts of death, pain, and disability. Elderly people do think of such issues and wonder what will happen to them and what the doctors will do. Preventing them from talking about these issues is not a solution.

Maybe the committees felt that I wasn't suited to ask questions about death and disability because of my inexperience. One of the first things I might need when I step out of medical school is just this sort of experience that I have missed.