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• Response to "consent" article
  Colin Parker
  Published on: 23 July 2007

• Published on: 23 July 2007

  Response to "consent" article

  • Colin Parker, Retired

  This is a surprising scientific example of not seeing the forest because of the trees which are carefully numbered and described. The error is taking one example from tissue retention and building a theory on it; the researchers take their own good research and simple information and conclude patients do not need 'more complex information'. But the contrast between simple and complex information is too simple.

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  This is a surprising scientific example of not seeing the forest because of the trees which are carefully numbered and described. The error is taking one example from tissue retention and building a theory on it; the researchers take their own good research and simple information and conclude patients do not need 'more complex information'. But the contrast between simple and complex information is too simple.

  Of course, information always needs to be appropriate, ie as simple as possible and as comprehensive as necessary, but sometimes this does not occur. We need to bring other examples into the equation. Consider the information the patients or carers received at Alder Hey: it was not sufficient, whether it was simple or complex or nonexistent. We are not concerned simply with risks to the patient, but also with valuing them.

  More pointedly, the researchers conclude with 'an important finding' that for the patient, giving informed consent is secondary to feeling valued and respected. Though interestingly they had found that their framework analysis suggested that consent was important as it showed that their opinions were valued and treated with respect. This is the traditional view that the necessity of giving informed consent generates the subjects' being valued and respected. To attempt to separate consent and feeling valued undermines the value of consent. Additionally, the researchers considered only those subjects who gave consent and generalised their findings to include others who were not in the study and who did not consent.

  Regardless of all that, the patients valued being listened to, but that is not enough as a method to balance the rights and duties of the researcher with those of the potential participants. It is clear that one cannot generalise from the Leeds example of good and trustworthy research projects, simply because there are some medical research studies which are not good and do not deserve participants' trust. One of the purposes of research ethics committees is to improve or reject such deficient projects.

  It is quite well known that the personal justification for giving consent is often inadequate; and it is a problem to know how to improve understanding in this area. One of the reasons why a bureaucratic system of evaluation of medical research studies is constructed in the UK is that a system is needed to deal with many research applications, ie one cannot assume that any particular research project is worthwhile or fair to patients or subjects.

  We can see that in some studies the subject's agreement to participate may not be justifiable: so when we evaluate consent we cannot equate a personal acceptance by the subject with an intellectual acceptance, ie giving consent after one feels valued is no substitute for relevant knowledge. The aim of the researcher in describing the protocol in the participant information sheets should be to present sufficient intellectual material about the risks and benefits of the research for the potential participants to judge whether to consent. This is a moving target and it is difficult to provide the right information for the potential subject; but regarding the research ethics committee which in this context represents an ideal of sufficient knowledge and ethical concern to judge the research protocol, their work will however inadequately reflect an idea of ideal social consent.

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  Conflict of Interest:
  None declared.

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