Abstract
One issue in this piece of research is the potential for harm for the researcher. An aspect of this is the health and safety considerations of a female dancer. She has a letter from her doctor indicating that what she wants to do is safe but the question is whether this information is sufficient. Her doctor will be aware of the kind of seizure she typically has, how long they last and so forth. However, one aspect of this research that may cause concern is its unpredictability, e.g. (a) what if there are complications such as the fit lasting longer than expected or (b) what would happen if she was unconscious and did not regain consciousness etc. or if she could hurt herself in the location? An ethics committee would want to see evidence of measures to ensure the health and safety of the researcher, and therefore protection from harm. For example, if the seizure lasted longer than 30 minutes, this would constitute a medical emergency. This highlights an unusual aspect of this research which is that during at least part of the research the researcher is not in control of the research. Therefore, an ethics committee must be satisfied that responsibility for the welfare of the researcher, which would usually be their own responsibility during the research, is ensured by other measures. These would include a risk assessment of the location for the research, minimizing the risk that the researcher would not come to physical harm whilst having the seizure – a protocol to be followed to ensure her safety and the availability of medically trained personnel in the vicinity in case there was a problem.
This piece of research also raises the issue of conducting research where the researcher is researching an effect on herself and the issue of what is acceptable when subjecting oneself to potential harms for the sake of research. One line of thought here is that there should be fewer concerns over consent as the researcher is fully aware of the potential harms and can decide whether she wants to undertake the risks involved in inducing a seizure. However, a different line of thought emphasizes that risks must be minimized and the ethical issues surrounding subjecting yourself to research procedures are not entirely addressed by the researcher consenting to do so. If the risk is deemed too high, then that individual should not subject themselves to it, regardless of their ability to consent to do so. There are clearly potential harms associated with inducing an epileptic seizure, the researcher may harm herself by doing so, and in the worst case it could result in a medical emergency. For some this may be an unacceptable risk. However, the consideration of the researcher’s doctor is relevant here, as this suggests that the risk of this happening is low and with the inclusion of medically trained personnel on site in the research design harm is mitigated and this is not a decisive objection to the research.
Having addressed the concerns surrounding the researcher herself, we can move on to consider concerns about the audience participants. Witnessing an individual having an epileptic seizure can be emotionally distressing. Again, a problem in this piece of research is trying to gauge in advance how audience members may react; potential participants may consent to be in the audience but subsequently find it quite distressing. The risk of this happening is hard to assess as we do not know in advance how the seizure will affect audience members. A related question is whether the consent process is adequate. Initial contact is made requesting participants for a study exploring attitudes to epilepsy. Those who respond to this will be told they are asked to witness an epileptic seizure and discuss their feelings about what they have witnessed; a key element here is that they are aware they will be asked to witness an induced epileptic seizure. This would make it less likely that those who think they would find it upsetting would agree to participate, although there is still the issue of the difficulty in predicting how people will respond. An ethics committee would want to see measures to support participants if they were distressed through the research, such as debriefing and support afterwards. There is a question of whether the risk of emotional distress involved here is acceptable, but again there are suitable measures that could be included to mitigate the risk and it would be paternalistic to prevent potential participants given full information about the project to decide for themselves whether they wished to be involved or not.
In summary there are clear risks here for the participants in terms of emotional distress and for the researcher in terms of harm to herself. An ethics committee would want to see these more fully addressed and sufficient measures in place to mitigate these. Once suitable measures were in place, such as providing support and debriefing for participants who did find it distressing and ensuring the health and safety of the researcher through an appropriate assessment of the location, and the availability of medically trained personnel, this could be approved.