Last month, the Indian Journal of Plastic Surgery retracted an article after patient informed the editor of the journal that it contained and photograph of her, the use of which she had not consented to.
The article titled Surgical reconstruction or prosthetic rehabilitation following orbital exenteration: The clinician’s dilemma was about a woman who underwent a prosthetic graft in her eye socket. The eye had been removed surgically after a cancerous growth. The patient’s photograph had a cropped image of her face, mostly only showing her eyes. The article had been published in March 2014.
The retraction notice said that the photograph was taken without the patient’s permission. The notice further added, “In regards of the privacy of the patient and on grounds of infringement of obtaining patient consent the article in concern is being retracted. The patient image will also be removed from the online version of the article.”
The editor of the journal Dr Mukund Jagannathan said in an email interview that the patient had sent an him an email asking that the photograph be removed. She had “recognised” her photograph on the website of the journal. “I don’t know what misgivings she had, but she requested that the photos be taken off the net,” he said. “It was a cropped photo of only part of the face.”
Jagannathan said that since there was no value of the article without photos, the entire article was retracted.
The article’s main author Dr Himanshi Aggarwal from King George’s Medical University in Lucknow is yet to answer the email queries from Scroll.in.
With increased access to medical journals online, such instances of breach of consent have been reported often. The lack of consent infringes of the privacy of the patient, who is often taken by surprise to see his or her image online.
Retraction Watch, a website that tracks retractions in scientific papers, has recorded several papers that were retracted on grounds of confidentiality all over the world.
For a 2013 article elaborating in the Journal of Trauma Management & Outcomes about brain surgery procedures at the Cleveland Clinic in Ohio, a surgeon failed to take consent from her patients before publishing case descriptions and CT scans, citing as reason that all identifying details had been removed. The article was retracted from the journal.
Sometimes, even after consent is taken, the patient or the patient’s guardians may not understand the extent to which the article is accessible to the public.
A 2012 paper in the Indian Journal of Dermatology, Venereology and Leprology had to be retracted after the parents of a 14-year-old Argentinian suffering with Dellman syndrome, a genetic brain disorder, revoked their consent. The author of paper said that the parents of this boy had not initially understood that the open access article could be browsed by the general public.
Retractions of articles are not easy to trace. The article on the eye surgery had been retracted in June, but Retraction Watch traced it only in November. By creating a repository of retracted articles, the blog attempts to promote transparency and integrity in science and scientific publishing.
“Unless journals inform such sites themselves, it is very difficult to trace a retraction,” said Amar Jesani, consulting editor with the Indian Journal of Medical Ethics. “There are tens of thousands of journals published (all over the world).”
While the prosthetic eye surgery article has been pulled down online, physical copies of the 2014 edition of the journal will remain with those who already have them.
Medical bodies around the world have laid out ethical standards to avoid these breaches of patient privacy. As per guidelines issued by American College of Medical Genetics and Genomics, before taking photographs of patients, the patient will have to provide consent for all uses that will be made of the image, including medical records, medical teaching, medical publication – open access or ones with a paywall.
The British Medical Journal’s guidelines mention an exception for images such as X-rays, ultrasound images, or images of indistinct parts of body that do not reveal the patient’s identity and say that these can be used without consent. However, any image that identifies the patient needs written consent.
The International Committee of Medical Journal Editors also specifies that nonessential identifying details should be omitted and informed consent should be obtained if there is any doubt that anonymity can be maintained. They also clearly state that masking eye region in photographs is inadequate protection of anonymity.
Many doctors in India usually take a “general consent” from the patient seeking permission to use the photos for medical purposes. “General consent is with reference to using these photos for medical purposes but if used in a journal etc, specific consent needs to be taken,” said Jagannathan.
However, in India, even medical photographs are often taken without a patient’s consent and then posted on social media.
However, even the way the prosthetic eye article was written providing details of the patient’s age, background, history of the disease that could help identify her. These should only be published with a specific consent of the patient, said Jesani.
“The interaction between a doctor and a patient is supposed to be confidential, unless there is a danger to larger society,” said Jesani. †