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ANALYSIS: Ainsley J Newson and Julian Sheather Commentary: Consent and confidentiality in publishing—the view of the BMJ’s ethics committee BMJ 2008; 337: a1232 [Full text]

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Patient's consent for publication

Brian B SCOTT   (16 September 2008)

The BMJ is wrong

Charles Essex   (30 September 2008)

Patient's consent for publication 16 September 2008
Brian B SCOTT, Honorary Consultant Physician Lincoln County Hospital, Lincoln LN2 5QY Send response to journal: Re: Patient's consent for publication	Your recent analysis [1] of the ethical debate about consent for publication was timely and informative. Presumably, one reason for requiring consent is the distress that might be caused if the patient or family inadvertently and unexpectedly came across the report. However, despite the public’s easier access to medical journals, especially via the internet, such an occurrence is remote, especially for reports in specialist journals. On the other hand, directly approaching the patient, or next of kin in the event of the patient’s death, can often be anticipated to cause distress and also be counterproductive as illustrated by the following: I submitted case reports of two patients who suffered a particular complication, following a certain procedure, related to concurrent chemotherapy. This relationship was not recognized and I thought it important to publicize it. I readily obtained consent from one of the patients. Sadly, the other patient had died. I was reluctant to seek consent from his widow because I thought the contact would create distress. However, the journal staff insisted, I complied and, as expected, the widow was upset and also disagreed about details in the report. I entered into correspondence about this but then the widow abruptly refused any consent and said she did not want me to contact her again. The report was therefore published, in a specialist BMJI Journal, without any details of the second patient, thus both reducing its usefulness and causing the distress that seeking consent was meant to prevent. 1. Newson AJ, Sheather J. The view of the BMJ’s ethics committee. BMJ 2008;337: 589. (13 September) Competing interests: None declared
The BMJ is wrong 30 September 2008
Charles Essex, Consultant neurodevelopmental paediatrician Child Devlopment Unit, Gulson Hospital, Coventry CV1 2HR Send response to journal: Re: The BMJ is wrong	The BMJ has got it wrong. Firstly, I have had two cases accepted for publication in the BMJ's Filler column provided I obtained parental consent. In each I believe seeking consent would have been wrong. In the first case, the child had died and my article was to highlight the selfish, jobsworth approach of a number of the multi disciplinary team who were more concerned with looking after their own interests than the needs of the patient. It would have been unacceptable in my opinion to approach the parents as they were unaware of what I consider was the shabby way in which they and their child had been treated. The second case was a wrong diagnosis and the lessons learnt. The relationship with the family was such that approaching them to seek their consent for an article would have further inflamed the situation, yet there were some valuable lessons for all of us. Secondly, how many cases constitute a case report? A colleague and I published a report of six cases of Duchenne’s Muscular Dystrophy¹. Families with a son with Duchenne’s Muscular Dystrophy in the West Midlands are a fairly small group. One could argue that they may recognise their sons from the description. The same may be true however if we had published 20 cases. Could an investigative journalist identify the child from the single case reports that were accepted for publication provided I got consent? I doubt if even the parents would have recognised their child as I anonimised the reports with different gender and age and no mention of the condition. Thirdly, in the interests of equity is the BMJ going to insist upon patients/parents who submit an article getting consent from their doctor if the article makes reference to the medical care that they have received? It may well be possible to identify the patient’s doctor from the locality that the patient is writing from and the condition from which they suffer. Alternatively, it may lead to people drawing the wrong conclusion about which doctor has been involved. Dr Charles Essex Consultant Neurodevelopmental Paediatrician Reference: 1. Essex C, Roper H. Lesson of the Week: Late Diagnosis of Duchenne’s Muscular Dystrophy presenting as Global Developmental Delay. BMJ 2001;323:37-8 Competing interests: CE has been on the receiving end of the BMJ's policy of insisting on consent.