As physicians, our most important responsibility lies in protecting patients, which includes a patient’s right to privacy. While patients’ rights are our foremost concern, the advancement of medicine relies on collaboration and the open exchange of ideas and research. Theneed to collect information about patients in the course of conducting research can present challenges in maintaining patient privacy and anonymity.Never is thismoreevident than in thepracticeof facialplastic and reconstructive surgery. Studies of many disease processes rely heavily on laboratory results and/or clinical radiographs; however, the primary formof “data” in facial plastic and reconstructive surgery are often patient photographs. While identifying informationcaneasilyberemovedfromlaboratory data, photographs of patients present a unique challenge. Patient photographs are not easily de-identified. Photographs of an ear, eye, or skin lesion in isolationmay not seem revealing.However, the true test of anonymity is notwhether the friends, family, or acquaintances of the patient could recognize them from a photograph but rather whether the patient could recognize their own image. Onemust be cautious that thepresenceof abirthmark, tattoo, orprominentmole included in a photograph, nomatter how small, might unmask the patient’s identity. In some cases inwhich the entire face of the patient is included in the photograph, the anonymity of the patient cannotbeguaranteed.Historically,attemptsatconcealingthe identity of patients included masking, which consists of placing blackbars over the eyes. This practicewas abandonedbymost journals in the 1980s as it becameapparent that patients could still be recognized by others and easily by themselves.1 Efforts addressing patient privacy and clinical photographs were included in the US Health Insurance Portability and Accountability Act of 1996 (HIPAA),2 which requires that full-face patient photographs or similarly identifiable images be completely removed from the medical record for the record to be considered de-identified. Obviously, patient photographs included in publications convey critical information, and their exclusionwouldundermine themessagebeing communicated. In situations in which patient anonymity cannot be guaranteed, authors must abandon attempts to deidentify clinical photographs and transition to askingpermission from the patient to publish their likeness. Facial plastic and reconstructive surgeons should obtain written informed consent prior to obtaining any patient photographs even if the intent is not to publish the images. Failure to obtain patient permission to be photographed can be considered an invasionof privacy even if the photographs are kept only as a confidential part of the medical record. In addition to the informed consent obtained at the time the patient is photographed, informed consent is necessary for publication. The International Committee of Medical Journal Editors releasedaposition statement in 1995 stating that identifying information, suchasphotographs,notbepublishedunless thepublication isnecessary for scientificpurposesand the patient has granted informed consent.3 Many journals, including JAMA Facial Plastic Surgery, JAMA, and other JAMA Network journals require patients to sign a journal-specific informed consent form prior to publication for any patients who are identifiable in text descriptions or photographs.4 Some authors have expressed frustration at this requirement, citing the inability to predict which journal amanuscriptwill be submitted to at the time initial informed consent is obtained. Others have expressed concern about the difficulty of locating and contacting patients to obtain informedconsentafter the fact.Whileadditional timemay be required to obtain journal-specific consent, Hood et al5 found that 85% of patients could be successfully located and consent obtained. The rationale behind this requirement lies in the protectionofnot only thepatient but the authors and journal aswell. The permission formused by JAMAFacial Plastic Surgery6 includes all vital aspects of informed consent and has been vetted by the appropriate legal counsel to ensure the appropriate protectionof all involved.Whilemanyauthors have relied onstandard structured informedconsent formsavailable from their institutions, the editorial staff of JAMAFacial Plastic Surgery frequently note some common omissions on these standard permission forms. For example, all patients identifiable by their photographs or detailed case descriptions in text of a manuscript submitted forapublicationshouldbegiven theopportunity to reviewthemanuscriptandmaterials inwhichthey are included orwaive their right to do so. In addition, the permission form must include provisions for the publication of the material on the Internet. These provisions are frequently omitted from standard forms, perhaps surprising given the common practice of publishing and displaying journal content online, not just in print. Theremaybeexceptional cases inwhich authorshaveobtained prior written informed consent for the use of a patient’s photographs or detailed case descriptions in publications but are unable to locate the patient to obtain a signature for the JAMA Facial Plastic Surgery permission form. In these unique circumstances, editorial staff and legal counsel representing JAMA Facial Plastic Surgery will review the previously obtained informed consent on an individual basis. If all aspects of informedconsent are adequately covered in the author’s informed consent form, an exception to the requireOpinion
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Feb 1, 2017
David Phillips + 2
Open Access