Published 8 September 2008, doi:10.1136/bmj.a1231
Cite this as: BMJ 2008;337:a1231

Analysis

Ethical debate

Gaining consent for publication in difficult cases involving children

¹ Clinical Ethics Advisory Service, Children’s Hospital at Westmead, Westmead, NSW 2145, Australia, ² Department of Allergy, Immunology, and Infectious Diseases, Children’s Hospital at Westmead, ³ University of Sydney, Sydney, NSW 2006, Australia, ⁴ Department of Medicine, Children’s Hospital at Westmead, ⁵ Paediatric Intensive Care Unit, Children’s Hospital at Westmead, ⁶ Children’s Neurosciences Centre, Royal Children’s Hospital, Melbourne, Victoria 3052, Australia, ⁷ Plunkett Centre, St Vincent’s Hospital, Darlinghurst, NSW 2010, Australia

Two years ago four paediatricians and an ethicist submitted to the BMJ a case study as an ethical debate which the BMJ decided not to publish because the authors had not obtained the consent of the patient’s parents for publication. The authors submitted it elsewhere, and the article was published last year.

Here the authors explain why they think the BMJ should have published despite the lack of consent; the editor of the journal that did publish the case study explains why he did so (doi: 10.1136/bmj.a1233); and two members of the BMJ’s ethics committee explain why they recommended not to publish it (doi: 10.1136/bmj.a1232). An accompanying editorial explains why English law would now not allow the BMJ to publish it without consent, even if we thought it reasonable to do so.

We recently wrote a case study on the treatment and care of an infant with spinal muscular atrophy type 1, an inherited disorder causing progressive muscle weakness without apparent intellectual impairment leading to complete paralysis and, without intervention, to death in infancy from respiratory failure. Our discussion focused on the fact that the parents wished their child to be kept alive by mechanical ventilation. Continuing ventilation was contrary to usual current Australian practice but consistent with a 2006 English High Court judgment relating to a child with the same disease.¹ We had varied views about the harms and benefits of continuing invasive ventilation for children with spinal muscular atrophy type 1, but we all thought that it was not in the best interests of this particular child. We submitted an article for publication to inform our colleagues’ thought about the very difficult questions raised in the treatment and care of . . . [Full text of this article]

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This article has been cited by other articles:

• Smith, J. (2008). Patient confidentiality and consent to publication. BMJ 337: a1572-a1572 [Full text]  
• Newson, A. J, Sheather, J. (2008). Commentary: Consent and confidentiality in publishing--the view of the BMJ's ethics committee. BMJ 337: a1232-a1232 [Full text]