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In the Journal of Medical Ethics, Mirjam de Vos and colleagues1 publish a provocative clinical ethics case study. They describe the case of a young child with severe brain damage whose parents wished to discontinue life-sustaining treatment against the advice of medical professionals. As noted in the accompanying editorial by David Isaacs, the case raises important questions about parents’ role in decision making for critically ill children.2 It also raises interesting questions about patient (or surrogate) consent for case studies.
Case studies are important in medical ethics. They provide a valuable link between ethical reflection and practice. Case reports can be useful in identifying new issues for ethical analysis that have not previously been considered.3 They can also provide an insight into the complexity of clinical medicine, and some of the challenges of applying ethical theory in the real world.
It is widely accepted that case reports should not include identifying details such as patient names, addresses or photographs unless those details are essential and patient consent has been obtained. However, deidentification may not be sufficient. Even if identifying details have been removed, the Committee on Publication Ethics recommends obtaining patient consent.4
Why is consent required even when no identifying details are published? Patient consent might avoid two possible harms from publication of case reports. The first of these arises if the patient were to identify himself or herself in a case report and feel aggrieved that their personal medical information had been shared without their permission. They might thereby lose trust in health professionals. Although this harm might be thought unlikely, the ready availability of medical papers on the internet renders …
Competing interests None.
Provenance and peer review Commissioned; internally peer reviewed.
↵i It would not remove the risk altogether. In the only published instance of harm from medical case reports of which we are aware, a patient complained to the General Medical Council after a friend recognised her in a psychiatric case report to which she had consented.6 In that case, the General Medical Council found the psychiatrists not guilty of professional misconduct because the patient had provided consent.7
↵ii We should note that we do not have the consent of the first family to mention their discussions about consent with de Vos and colleagues. Nevertheless, we judged that here our criteria for publication in the absence of consent apply: only the individuals concerned could identify themselves, harm is likely non-existent and there is a significant public interest in discussion of the issues.
↵iii We have focused in this editorial on patient consent. We do not regard it as usually necessary to obtain the consent of professionals who may be mentioned in a case report even if they may recognise themselves. Consent would be required if there is a possibility that the physician (or other professional) would be able to be identified with confidence by a third party.