My aim has been to write a blog weekly, but there is a limitation to the amount of verbal output I can achieve in one week (I accept that this may come as a shock to my parents and a fair few people I know). My primary occupation recently has been the development of a questionnaire., as I need first-hand data to draw conclusions in addition to those that I have drawn from research. Naturally this involves humans, and anything that involves humans involves a submission to the ethics committee.
There have been occurrences in history where scientists have been somewhat enthusiastic about their work, but have not considered the lasting implications on their participants. I like a (fortunately) fictitious example to demonstrate this point. Imagine, if you will, two boats on a river. On one boat is a floating prison, complete with a full complement of convicts and prison officers to keep an eye on them. On the other boat is a ferry full to capacity with a random selection of the general public. Each boat is rigged with explosives, which will sink said boat and kill all those on board. Each boat contains a detonator for the other boat. Each boat is told that they can save themselves by destroying the other boat. If no detonator is activated in 5 minutes, the explosives on both boats will be detonated.
This is a fascinating experiment in regards to how people react. Tad unethical though. (This appears in a recent Hollywood film, but I don’t want to spoil it for anyone by giving the name.) Practically speaking there are few ethical issues: consent was not given by the participants; likely to be traumatic for all involved; fatal for some and most likely criminal.
The ethics committee is there as a safeguard to prevent scientists from being overly enthusiastic. This applies to questionnaires as there would be nothing to prevent my framing the questions in such a way to determine all the single females of a given age with a given list of interests and either using it to find myself good company or selling the list to others. Well, at least not without obtaining clear consent first and proving the data were valid to my research.
The process for ethics committee referral involves the completing of a form and creation of a document with an explanation of how data is used, funded, any external review processes, technology involved, the form of any requests for consent and the questions themselves. Having compiled a list of questions to ask on a survey website, it was necessary to express each question being asked, the logic for the inclusion of question (if any) and the possible responses.
The form itself and supporting document must be emailed to the chair of the ethics committee and the secretary of the committee. These both need to be printed and delivered to the secretary of the committee as the form requires a signature.
Having spent the best part of the previous week compiling the questionnaire, followed by meeting with Mike Wald (my supervisor) and E.A. to review, this established the need to find guinea pigs for testing. This meeting and the testing was done on the Friday of that week. Naturally, I was keen to get this done and dusted. I ensured that the paperwork was complete and ready by the end of the weekend, only to find my supervisor was away at a conference on the following Monday and would be for a few days. Hence a flurry of emails to find someone to sign on behalf of my supervisor and after walking I finally found someone able to sign on Mike’s behalf. The urgency was based on the need for data for inclusion into my progress report.
The need for ethics approval is often related to the data protection act. My view was and remains that it would not be possible to identify a person from the data collected, therefore the data could be classed as being anonymous and thus the data protection act did not apply. The ethics committee differed on this point and thus rejected my initial request for approval. This was incredibly frustrating given the effort involved. However, I do understand that the ethics committee must protect the reputation of the University and therefore are likely to be very cautious.
Naturally, I immediately flagged a meeting with my supervisor to best determine a method for getting the questionnaire out there whilst putting the ethics committee at ease. Watch this space…