Informed Consent Statement


Patients have a right to privacy that should not be infringed without infor-med consent. Identifying information, including patients' names, initials, or hospital numbers, should not be published in written descriptions, ph-otographs, and pedigrees unless the information is essential for scientific purposes and the patient (or parent or guardian) gives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. Au-thors should identify Individuals who provide writing assistance and dis-close the funding source for this assistance.

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