Publication of Identifying Information and Protection of Research Participants

Abstract

Dear Editor, We read with a lot of interest the Letter to Editor titled, “White/black bars to cover eyes, standard biomedical ethics, patient’s privacy, and consent for publication” authored by Joob and Wiwanitkit.[1] We appreciate the authors for initiating the discussion on a very important aspect related to patient’s privacy and autonomy. According to the recommendations of International Committee of Medical Journal Editors (ICMJE),[2] patients have a right to privacy that should not be violated without informed consent. We wish to take this discussion forward by highlighting certain important points related to consent of patients in regard to publication of photographs. The authors have written that the main concepts are “If consent has been provided by a patient for publication of clinical images, then there should be no requirement of obstruction of the eyes.” However, according to the ICMJE recommendations,[2] whenever anonymity is doubtful, informed consent should be obtained, for example, when the eyes are masked in photographs, in such cases, anonymity is doubtful. Interestingly, according to Robinson et al.,[3] the real test of anonymity is whether the patient could recognize his or her own image. So much so, even a tattoo or a unique mole included in a photograph might reveal the patient’s identity.[3] Identifying information of the patient should not be published in written descriptions and photographs, unless it is essential for scientific purposes and the patient has given written informed consent for publication. In case there is a potential of any identifiable material be available online or in print after publication, the authors should disclose this information to the patients. In fact, many journals require the authors[4,5] to obtain informed consent/patient permission form (specific for that journal) before publication for any patients who are identifiable in text descriptions or photographs. It is laudable that certain journals have made the forms available in different languages; the British Medical Journal[4] provides patient consent form in 23 different languages (including many Asian languages) and JAMA Dermatology[5] provides a template for patient consent for publication of identifying material in JAMA Network Journals in English language, with a provision of translated version in nine more languages on request. Some journals also require that the manuscript should be read by the patient before submission.[4,5] If the patient has not seen the final version of the paper, then the patient consent form should be amended accordingly.[4] Bennett et al.[6] argue that in spite of the patient permission forms, it remains uncertain whether all the potential risks for the patients have been taken care of or not. For instance, in case of vulnerable populations, such as children, non-English speaking etc., as they may not be able to comprehend the full information and thus are at risk of harm, in spite of the informed consent. We wish to invite discussion whether we should have separate consent forms for online publication of the photographs, considering that many journals are online and the digital foot print is permanent. Another point of further discussion can be the archival of these consent forms, whether the authors or the journals should archive these consent forms? Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.