A manuscript was submitted about prenatal diagnosis of a specific cardiac disease. Short case reports of four babies who died were included. Although there are no names, we believe that there are sufficient details about the particular baby being described to be identified by the parents and by those involved in their care. The authors argue that:
“As these deaths occurred over 13 years in a large region and the reports only include those with a very specific cardiac diagnosis and do not include any identifying details, we felt it was fair to say that the case reports do not identify the individual. It did not seem appropriate to contact bereaved parents many years later to seek consent for this and we agreed that this was not necessary. The congenital anomalies database has MREC approval through the British Isles Network of Congenital Anomaly Registers. It has also been granted exemption from Section 60 of the Health and Social Care Act 2001 by the Patient Information Advisory Group (PIAG 2-08(e)/2002). This allows us to collect and use the information without specific consent and we believe this covers the use of these case histories.”
Clearly the authors are pleading that they should be allowed to use these case histories on the basis of the best interests of the community.
Is the blanket ethical approval sufficient for us to publish these short case histories, or do the authors need permission from the parents of the children who died?
The Forum’s view was that it is for the editor to decide whether or not he considers that the ethics approval, as obtained in this case, was sufficient. The editor is not bound by the decision of the ethics committee. Many journals take the view that if there is any possibility that the case can be identified, then consent is necessary, and will not publish case reports if consent from the patients or parents is not obtained. If it is impossible to obtain consent, the editor may decide that it is in the public interest to publish the case, but he or she would have to be prepared to justifiy their decision. The Forum questioned the relevance of the case reports and whether the cases could be summarised, omitting all case details. The general consensus was the it was up to the editor to make the final decision and that he should consider the relevance of publishing all of the details of the cases rather than just a summary.