MHN board tackles case study ethics

Mental Health Nursing,  Mar 2004  

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Stories of how body parts from dead babies were plundered over many years caused shockwaves and led to major enquiries into medical ethics.

Can people's lives, however, also be used, without their knowledge or consent, as part of a research 'industry'?

Mental Health Nursing's editorial board has been tackling the issue of anonymous case studies and the incorporation of individual service users' experiences into published writing. The board has redrafted its guidelines to forbid the use of case study material that has not been gathered with the consent of the service user. The journal now requires that the service user should have agreed to their life details being used and that s/he reads the text of the case study and approves it.

Editorial board chair Peter Wilkin said the discussions had been very far reaching and very difficult: 'We do not want to restrict the spread of good practice through publications in Mental Health Nursing. But there was a strong feeling that all who came into contact with mental health services had ownership of their life histories. These couid not be used without their agreement to illustrate a piece of writing.

'Although they were always anonymised, we were concerned that very specific stories could potentially be sourced to a particular location because the author's identity and background is always included in the legend. Some authors alter details to mask the identity but then there is a question about what context is relevant and what is not.'

The new guidelines will have the following provisions inserted:

1. All case studies should be anonymised (unless the service user has specifically requested that this should not happen) to protect the identity of the service user(s) referred to and any other non-professional people (e.g. carers) who may be identifiable either by direct reference or implication

2. All authors must gain consent from all service users that are referred to on an individual basis to publish material that refers to them within the case study

3. If the service user refuses consent - for whatever reason - that is an end to the process. The service user should not feature in the case study

4. If consent from the service user has been gained, the case study should then be submitted for refereeing, together with affirmation of consent on the Consent to Publish Form. If the service user has consented to his/her details being used, s/he should be asked to read and approve the case study before it is submitted for publication

Earlier proposals to allow carers or next of kin to give permission in the event of incapacity, death or disappearance were dropped.

'The views of carers and next of kin could be problematic or unrepresentative of a particular service user who may not have nominated them to exercise judgment on their behalf, said editor Laurence Pollock.

'We decided the fairest approach would be to go purely with case studies authorised by the subject where he or she was in a position to make that decision.

'I personally, would like to see more case studies where the subject agrees to be identified. This would give added credibilityand greater practitionerservice user partnership.'

The board canvassed many views and looked at other ethical guidelines. See: Confidentiality: NHS Code of Practice version 3.0 (28/07/03) at http://www.doh.gov.uk/ipu/confiden (or telephone: 08453 660066)

Copyright Community Psychiatric Nurses Association Mar 2004
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