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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 …