Category: withdrawn patient consent

Family decries publication of child’s picture in open access journal

indian-journal-of-dermatology-venereology-and-leprologyAn author of a paper about a boy with a rare genetic disorder has retracted it after the patient’s family revoked permission to use his photo.

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: Continue reading Family decries publication of child’s picture in open access journal

Social networking site privacy breach complaint prompts retraction

patients-like-meA journal has removed a paper after realizing it contained a verbatim quote from a patient that could reveal the patient’s identity.

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: Continue reading Social networking site privacy breach complaint prompts retraction

Despite apology, bagpipes study not slated for retraction

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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: Continue reading Despite apology, bagpipes study not slated for retraction

Patients did not okay publishing brain surgery details

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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:

Continue reading Patients did not okay publishing brain surgery details

Should researchers guilty of misconduct go to “rehab”?

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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: Continue reading Should researchers guilty of misconduct go to “rehab”?

PLOS ONE republishes removed chronic fatigue syndrome data

PLOS OnePLOS ONE has republished data that were abruptly removed two weeks ago after the authors expressed concerns they did not have permission to release them.

The dataset — de-identified information from people with chronic fatigue syndrome — was removed May 18, noting it was “published in error.” But this week, the journal republished the dataset, saying the authors’ university had been consulted, and the dataset could be released.

This paper has drawn scrutiny for its similarities to a controversial “PACE” trial of chronic fatigue syndrome.

Here’s the second correction notice for “Therapist Effects and the Impact of Early Therapeutic Alliance on Symptomatic Outcome in Chronic Fatigue Syndrome,” released June 1:

Continue reading PLOS ONE republishes removed chronic fatigue syndrome data

Golden rice paper pulled after judge rules for journal

home_coverThe American Journal of Clinical Nutrition is retracting a paper that showed genetically engineered rice serves as an effective vitamin A supplement after a Massachusetts judge denied the first author’s motion for an injunction against the publisher.

The journal announced plans to retract the paper last year following allegations that the paper contained ethical mis-steps, such as not getting informed consent from the parents of children eating the rice, and faking ethics approval documents.

Last July, first author Guangwen Tang at Tufts University filed a complaint and motion for preliminary injunction against the journal’s publisher, the American Society for Nutrition, to stop the retraction.

According to the ASN, on July 17, a Massachusetts Superior Court “cleared the way” for the publisher to retract the paper. So they have, as of July 29. Here’s more from the retraction notice:

Continue reading Golden rice paper pulled after judge rules for journal

Ethics dispute forces retraction of paper on Hep C in Japanese leper colony

jcmcoverHere’s a case of retraction being a hammer when a scalpel might have been better.

The authors of a 2011 paper in the Journal of Clinical Microbiology looking at transmission of hepatitis C in a former leper colony in Japan have retracted the article because an ethics panel in that country objected to the scientists’ use of fetal tissue.

The article involves a controversial aspect of modern Japanese history — the country’s efforts to eradicate leprosy, or Hansen’s disease, by isolating patients in a string of state-run sanatoriums. The policy was eventually realized to be unnecessary and ruled unconstitutional in 2001, triggering a wave of apologies to patients and their families.

Continue reading Ethics dispute forces retraction of paper on Hep C in Japanese leper colony

Camomile allergy case report retracted after patients withdraw consent post-publication

aaciIn what may be a first, a researcher in Turkey has withdrawn a paper because the patients whose cases she described wthdrew their consent after it was published.

Here’s the notice, from Allergy, Asthma, & Clinical Immunology, of a paper titled “Severe contact dermatitis due to camomile: a common complementary remedy with potential sensitization risks:” Continue reading Camomile allergy case report retracted after patients withdraw consent post-publication