The ethics of confidentiality in teaching and research: Invited commentary on… re-evaluating confidentiality

Draper & Rogers (2005, this issue) have put an important subject under the ethical microscope. They have demonstrated that the current, fairly simple, rules applying to the publication of case studies and dissemination of patient information in teaching are inadequate and need revision. This is particularly important because such forms of communication are likely to increase in the future. Many journals, including the British Journal of Psychiatry, generally frown upon case studies as representing little value to science: case studies unnecessarily focus on the particular; their message is only valuable when it is general. However, they aren’t going to go away because their educational value is obvious, as anyone who looks at the handling of almost any scientific subject in the mass media will testify. Experts can pontificate on hypotheses, proportions, means and significance to little effect and the real message comes home from a sufferer or successfully treated patient who adds human flesh to a dry factual skeleton. This need to particularise is necessary in all parts of teaching.

Violation, indiscretion and secretiveness

We live in a curious society in which we are becoming ever more open with regard to freedom of information but ever more protective towards the disclosure of personal information. Thus, the public’s right to know and the Data Protection Act often seem to be on a collision course, as recent controversy over the Ian Huntley case and the Soham child murders illustrates. We cannot afford to be secretive and yet if this provokes feelings of violation we have to be.

The goal posts have shifted in the past 20 years and the old utilitarian hypothesis that we should do the greatest good for the greatest number, a common justification for participating in research which has no direct benefit to the individuals taking part at the time, has been replaced by the even older primum non nocere, above all do no harm.

Anonymisation and equity

Draper & Rogers make a strong case for better use of anonymisation in teaching and publication. This is certainly a way forward and definitely justified, as so much of the personal information given in case reports for teaching purposes is redundant to the main message. Unless we can tackle the problems of disclosure and potential violation we are in danger of retreating to a defensive position whereby we publish and teach using only an extreme minority of patients who are narcissistically keen for their special problems to be exposed to the world. I have great sympathy with Draper & Rogers’ suggestion that

‘unless incompetent patients participate in research, as a group either they will not benefit from it or benefit will be retarded as advances resulting from trials on competent patients will be applied on an individual and ad hoc basis’.

This problem is prominent in conditions such as learning disability, in which enlightened views of care have not been accompanied by similar enlightenment in research (Fraser, 2000; Oliver et al, 2002). Similarly, if patients who feel potentially violated or discriminated against for other reasons do not take part in teaching and research, as a group they are likely to suffer because their special need will not be taken into account by those who are involved in developing guidelines and treatments for these individuals. We have to re-establish the message that good teaching and good research benefit everybody and the difficulties in achieving them should never become personal obstacles.