A preschool boy had a biopsy to confirm a condition from which he subsequently made a complete recovery. Later, he and his younger brother were reported by their female carer to have developed a possible recurrence and this looked likely on near-patient testing. At each review their carer urged us to undertake further biopsies on them both, but we did not feel that this was necessary.
Their carer also reported that they were receiving treatment for three other disparate conditions and one suffered from a fourth unpleasant symptom.
During a hospital admission the near-patient test we were performing repeatedly was always abnormal when his carer was on the ward, and normal when she was not. Further testing of the samples in question showed contamination with female genetic material. The carer admitted to deliberately contaminating the samples to achieve a positive test.
While this condition is well described, it has not been identified by karyotyping in this way before. This probably accounted for us being slow to diagnose it. There are extremely important reasons for diagnosing fabricated illnesses.
Unsurprisingly, the carer was not prepared to give consent for publication. Despite anonymising the case, editors of medical journals are unprepared to publish it without her consent. As a result of this decision, this new diagnostic information will not be disseminated to other paediatricians, which may contribute to other children being unnecessarily exposed to undiagnosed abuse. There will be many other similar examples.
The Forum agreed that in cases such as this, many editors of medical journals in the UK are unlikely to publish the study without consent. Appealing to editors to publish the case report in its current form on the grounds that it is in the public interest is not likely to be successful as it might prove difficult to balance the benefit to society against the rights of the family. Three suggestions were put forward. (1) The paper could be submitted to a journal outside of the UK. (2) The editor could publish an anonymous annotation on the subject and hence this new diagnostic information would be disseminated to other paediatricians. (3) The laboratory test used, without any patient details, could be reported—perhaps as a letter—again allowing dissemination of the information without revealing the specific case.
A UK journal has now agreed to publish a letter from us that outlines the medical issues involved in this case and discusses the potential problems in future publications because of the legal position relating to case reports.