Have you ever noticed how the word unethical seems to take on the same meaning as politically correct? There’s a great illustration of this in the Herald today. Dr. Shaun Holt writes our ethics system for approval of new research is now so unwieldy, it is preventing perfectly legitimate research from being done. Shaun recounts his experience:
“As an experienced medical researcher and an ex-member of an ethics committee, I am likely to know about the ethical requirements of medical research. Last year I submitted an application for a simple study to see if honey could help treat a common skin infection in children that is otherwise very difficult to treat. Only 15 children were required for the study, and all the caregivers had to do was to apply the honey, cover with a dressing and see if it seemed to help.
“In order to apply to the ethics committee, I had to consult a Maori health provider to make sure there were no cultural issues if any Maori children took part and see a justice of the peace to sign a statutory declaration.
“The application itself needed around 9000 words to complete and over 350 pages had to be submitted. For a study which could not be any simpler and had almost no chance of causing any harm, the application process took longer than doing the study would have.
“The study was rejected by the committee and around 40 points were raised, most of which were either wrong or not relevant to the ethics of the study. For example, I was told to consult at least two more Maori health providers and to have systems in place for interpreters, even though the study was to be undertaken by a few GPs who would ask their own patients with this condition if they wanted to take part.”
Here is a fine example of political correctness encroaching on the word ethics. In general, the ethicality of most research projects is dead easy. There is already a requirement to get written permission from each participant, so there is an inbuilt requirement to ensure that the participant understands what s/he is signing up for. Anything beyond this is politically correct nonsense. This particular piece of research is a simple GP-driven pilot. to require this sort of thing to go through a tortuous and politically driven process is madness, and is one of the causes of the deleterious state of medical research in this country (the other is lousy funding, but that’s another issue).
I see this sort of thinking in many other places besides the Ethics Committee. I have seen the words “unethical practice” used to describe actions where the user of the phrase clearly meant “does not coincide with my world-view”. I recall being called unethical because I would not allow more than two members of a Whanau in to see a patient at the same time. I have been called unethical because, against a families wishes, I told a patient they were dying of cancer – because the patient asked me directly if this was so.
Politics determines that it is unethical to tell a family the results of their 14 year old daughters pregnancy test and it is unethical to tell a wife her husband’s blood test results, despite the husband giving verbal permission over the phone. I have been told it would be unethical to tell a patient my deep misgivings about the Gardasil vaccine and I was told the same when I expressed my doubts about the meningococcal campaign.
Ethics is something that is based on shared values rather than political diktat. Values, in turn, should be based on principles of right and wrong rather than whatever is the prevailing opinion. When we allow our notion of ethics to be subverted by the current flavour of political opinion, we are staring into the same abyss that allowed Hitler to murder six million Jews, Stalin to starve millions of cossacks, MacCarthy to destroy lives on mere suspicion and Pol Pot to kill based on his notion of a good society.
Hindering research is probably the least of our problems.