Getting a patient’s consent for publicationBMJ 2008; 337 doi: https://doi.org/10.1136/bmj.a1633 (Published 11 September 2008) Cite this as: BMJ 2008;337:a1633
- Fiona Godlee, editor, BMJ
The need to ask patients for consent before publishing their details in journals and elsewhere is well established. The BMJ’s policy on this has been in place, with minor variations, for more than 10 years (http://resources.bmj.com/bmj/authors/editorial-policies/copy_of_patient-confidentiality)
Yet we still receive articles that don’t have patient consent. To our surprise some authors don’t seem to have thought about it at all, but occasionally authors tell us that they can’t get consent for various reasons. We then enter murky and sometimes stormy waters, navigated with the help of the BMJ’s ethics committee. Is the case is of sufficient public health or clinical importance to waive the need for consent and, if so, can it be adequately anonymised?
One such interesting case is described this week. As the authors themselves explain (doi:10.1136/bmj.a1231), they were unwilling to ask for consent to publish a report of the ethical conflicts around stopping life support for a child with a rare neuromuscular disorder. They argued that this would jeopardise the already fragile relationship with the child’s parents. However, the BMJ’s ethics committee took the view that there was not a sufficient public health imperative to override the need for consent, and that the rarity of the case made adequate anonymisation impossible (doi:10.1136/bmj.a1232). The editor of the journal that eventually published the case gives his reasons for doing so (doi:10.1136/bmj.a1233).
Our decision not to publish was made on ethical grounds. At the time we did allow exceptions but felt that in this case consent could have been obtained. Since then it has become clear that UK law makes it illegal to publish medical information about an identifiable living patient without consent. As Jane Smith comments in an accompanying editorial (doi:10.1136/bmj.a1572), whether for good or bad “society has decided that a loss of communication about matters of public health importance is the price to be paid for the right of an individual to have control over the publication of his or her own medical information.”
Should we be concerned that this will damage the pursuit of medical knowledge? I think not. As Jane Smith says, difficult cases like the early descriptions of child abuse and Munchausen syndrome by proxy could still be published under the new law but would have to be presented differently, with less detail and probably without identifying the authors. We didn’t consider removing the authors’ names and affiliations in the case described, but it would have been perhaps the only way to fully ensure that the patient could not be identified.
The BMJ’s advice to authors remains largely unchanged. Ask for the patient’s consent. If this isn’t possible and you think the case has a strong public health interest, ask the editor about the possibility of anonymisation. All the contributors to this debate agree that patient confidentiality is the mainstay of the doctor-patient relationship and of the public’s continuing trust in the medical profession. We must hold fast to it.
Cite this as: BMJ 2008;337:a1633