Archive for the ‘withdrawn patient consent’ Category
When a group of authors decided to write up a curious case of a 35-year-old woman with a mysterious mass that took 11 years to be diagnosed, they tried repeatedly to contact the patient for her permission. When they couldn’t reach her, they published the paper anyway, removing any identifiable information.
But the report apparently included enough details for the patient to recognize herself — and when she read the paper, she asked the authors to retract it.
That’s the story according to the publisher of the 2016 case study, which recently retracted it with this notice:
A psychoanalyst has retracted an award-winning 2016 paper over concerns that it contained “sensitive” patient information.
On July 15, Judith L. Mitrani, a psychoanalyst based in California, published an article that included “sensitive clinical material” about a patient. Although we do not know what prompted the concerns, on November 21, Mitrani, in agreement with the journal’s editor-in-chief and publisher, retracted the article. The author and editor told us the retraction was meant to prevent non-experts from accessing the paper and to stop other non-Wiley sites from posting it.
The article was published after it had won the journal’s essay contest in 2015.
Here’s the retraction notice for “On Separating One from the Other: Images of a Developing Self,” published in the British Journal of Psychotherapy (BJP):
Researchers in Ireland have retracted a case study about a rare type of cancer in a child because – contrary to what they claimed in the paper – they had not obtained the necessary permission from the parents.
In the June 2016 article, the authors stated they had received “written informed consent” from the parents to publish the case. But according to the retraction notice — issued just a few months later in October — that was not the case.
Here’s the retraction notice for “Paediatric Ewing-like sarcoma arising from the cranium – a unique diagnostic challenge,” which for legal reasons, the publisher has withdrawn from public view:
Mukund Jagannathan, the journal’s editor-in-chief and a plastic surgeon in India, told Retraction Watch:
The patient wrote to the editor, mentioning that her photo was present in the article originally published, and politely asked us to remove her photos from public display on the Internet.
Asked whether the journal considered issuing a partial retraction to only hide the patient’s identity, Jagannathan said: Read the rest of this entry »
Three psychiatric studies of children contained a myriad of problems that may have put participants at greater risk than was disclosed by consent forms, according to a 2014 letter sent to hundreds of the participants and their families.
Through a public records request, we’ve obtained a copy of the letter — which lists a host of problems in the studies, ranging from enrolling ineligible patients, not informing families of the risks associated with the studies, and skipping tests intended to minimize the risks associated with lithium.
In 2013, Mani Pavuluri told the University of Illinois at Chicago that one of her study participants had been hospitalized — an event which prompted the university to halt three of her studies, launch a misconduct probe, and send letters to approximately 350 families of children participating in the research, notifying them of what happened.
The letter concludes:
The 2012 paper in the Indian Journal of Dermatology, Venereology and Leprology (IJDVL) told the tale of a 14-year old boy with Delleman syndrome, a condition that often results in the development of cysts within the cavities of the skull, leading to malformations in the eyes, brain, and skin.
Mabel Nocito, the study’s first and corresponding author from Hospital Churruca in Buenos Aires, Argentina told us the parents initially gave permission to publish their son’s picture, but then became concerned when they realized the paper was freely accessible: Read the rest of this entry »
The journal learned of the slip-up after receiving a complaint from a social networking site for patients called PatientsLikeMe, which enables people with similar conditions to connect with each other. The retracted paper — ironically about automatically sanitizing private information on social networking sites — included a brief quote from an HIV-positive user of the site, containing specific dates and infections the patient had experienced.
The corresponding author of the study in Expert Systems and Applications confirmed to us that the letter from PatientsLikeMe about two lines of text in the study triggered its removal.
The journal has republished an updated version of the paper without the problematic text.
Here’s an excerpt from the complaint, sent by Paul Wicks, Principal Scientist and Vice President of Innovation at PatientsLikeMe, to the researchers and the journal in December 2015: Read the rest of this entry »
It’s not often that a paper elicits an apology — but that’s just what happened when family members first learned a bagpipe musician died from inhaling mold and fungi from a case study reported in a journal. The hospital has since apologized; the journal, however, told us it is not planning to issue a retraction.
The University Hospital of South Manchester NHS Foundation Trust in Wythenshawe, UK, has apologized and launched an internal investigation into the case report after the family’s distress was extensively covered by the UK’s mainstream media, such as The BBC, The Independent, The Daily Mail, and The Telegraph.
There seem to be conflicting accounts over whether any consent was obtained to publish the report. The Thorax paper says the patient gave consent, and according to Gisli Jenkins, co-editor-in-chief of the journal and a professor of experimental medicine at Nottingham University in the UK, consent was sought from the family. But the patient’s daughter told us that neither the next of kin nor the patient were approached for consent.
The release of the report on August 22 was “completely unethical,” said Erin Tabinor, daughter of musician Bruce Campbell and a makeup artist in Liverpool, UK. Tabinor told us that the family wasn’t aware that playing bagpipes was the cause of Campbell’s death: Read the rest of this entry »
BioMed Central has retracted a paper after realizing it shared details on the brain surgeries of four patients without their consent.
Darlene Lobel, a neurosurgeon at the Cleveland Clinic in Ohio, agreed to the retraction, and told us she didn’t know that she needed consent from the patients since all identifying details had been removed. The paper describes a technique for craniotomy — opening up the skull to access the brain — and included CT scans of hemorrhaging and swelling that the patients experienced, as well as other details such as their gender and age.
Here’s the retraction notice:
A report on the first few years of “researcher rehab” suggests that three days of intensive training have a lasting impact on participants.
Specifically, among participants — all of whom had been found guilty of at least one type of misconduct — the authors report that:
A year later, follow-up surveys indicate that the vast majority have changed how they work.
The authors claim this shows the program is worth the time and investment — a $500,000 grant from the National Institutes of Health, and a cost of $3,000 per participant for the three-day course. Do you agree? Tell us what you think in our poll at the end of the story.
Infractions ranged from consent issues for human subjects, plagiarism, and outright fraud. Still, researchers who need this training aren’t much different from everyone else, the authors note in “Lessons of researcher rehab,” published today by Nature: Read the rest of this entry »