General rules of informed consent

Under all circumstances, patients and all other study subjects have a right to privacy that must not be infringed without their informed consent. Identifying information, including patients’ names, initials or hospital numbers, must not be published in written descriptions, photographs or pedigrees unless the information is essential for scientific purposes and the patient (or parent or guardian) gives written informed consent for publication. Informed consent for this purpose requires that a patient who is identifiable be shown the manuscript to be published if they wish. In their papers authors must identify individuals who provided assistance with collecting the informed consents and disclose the funding source for this assistance if any.

Identifying details should be omitted whenever they are not essential. Complete anonymity is difficult to achieve, however, and informed consent must be obtained if there is any doubt. For example, masking the eye region in photographs of patients is inadequate protection of anonymity. If identifying characteristics are altered to protect anonymity, such as in genetic pedigrees, authors should provide assurance that alterations do not distort scientific meaning and editors should so note.