Declaration of informed consent

Patients have a right to privacy that should not be infringed without informed consent. Identifying information, including patient names, initials or hospital numbers, should not be published in written descriptions, photographs and pedigrees, unless the information is essential for scientific purposes and the patient (or parent or guardian) gives informed consent in writing for publication. Informed consent for this purpose requires that an identifiable patient see the manuscript to be published. Authors should identify the individuals who assist in writing and disclose the source of funding for that assistance.

Identification details should be omitted if 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 from anonymity. If the identification characteristics are changed to protect anonymity, as in genetic lines, authors must ensure that the changes do not distort scientific meaning and publishers must do so.