Retraction Watch

Tracking retractions as a window into the scientific process

Archive for the ‘withdrawn patient consent’ Category

Genetic disorder gets name change, but patient’s father still not happy

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Credit: Online Mendelian Inheritance in Man

The leading genetic disease database has chosen a new name for a genetic condition, following complaints from a man whose son has the condition.

On Aug. 11, 2017, two days after our coverage of the situation, the Online Mendelian Inheritance in Man (OMIM) database changed the primary name of the phenotype associated with mutations in the RPS23 gene. The new name describes a set of features: “Brachycephaly, Trichomegaly, and Developmental Delay,” or BTDD.

Brachycephaly describes a condition where the back of the head is abnormally flat and trichomegaly refers to extra length, curling, pigmentation, or thickness of the eyelashes.

Marc Pieterse, of the Netherlands, has a son with the rare RPS23 mutation, one of two known patients in the world. The mutation affects ribosomes, cell components involved in protein production. On Aug. 9, we reported on Pieterse’s crusade against OMIM’s original name for the condition, which dubbed it a syndrome. He has feared that calling it a syndrome would “stigmatize” his son’s condition and tried to get the paper underpinning the OMIM entry retracted. The American Journal of Human Genetics has said it will not retract the paper.

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Written by Andrew P. Han

August 16th, 2017 at 9:55 am

Fearing “stigmatization,” patient’s father seeks retraction of paper on rare genetic mutation

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The father of a boy with a rare genetic mutation has accused a scientist of exploiting his child by proclaiming the defect a “genetic syndrome” and naming it after herself.

At an impasse with scientists investigating, publicizing, and interpreting his son’s condition, the father seems willing to use any leverage he can muster to remove the “syndrome” entry in an online genetic disease database. Based solely on an email he obtained from the database director, the father became convinced that if the paper underpinning the entry were retracted, the syndrome would go down with it. So earlier this year, he withdrew his consent and asked the journal that published the paper for a retraction, based on improper patient consent. He has also threatened to lob accusations of research misconduct at the paper’s last author. Read the rest of this entry »

Written by Andrew P. Han

August 9th, 2017 at 8:00 am

Uni dings schizophrenia studies for problems with informed consent, other flaws

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Psychiatry journals have retracted two papers evaluating a schizophrenia drug after a university in Japan flagged issues, such as a lack of written informed consent.

The papers—published in Human Psychopharmacology: Clinical & Experimental in 2012 and Psychiatry and Clinical Neurosciences in 2014—examined the safety and effectiveness of an antipsychotic drug in patients with schizophrenia.

According to the retraction notice in Psychiatry and Clinical Neurosciences, the ethics committee at St. Marianna University School of Medicine in Kawasaki found that “the trial included subjects who did not satisfy inclusion criteria.” For instance, not all patients provided written informed consent. But the university found no evidence for data falsification or fabrication.

A spokesperson for Human Psychopharmacology told us: Read the rest of this entry »

Authors say patient threatened legal action after being subject of scholarly paper

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A patient appears to have had a change of heart about being featured in a case report.

The patient cannot be identified in the paper published in Journal of Gastrointestinal and Liver Diseases. However, according to the retraction notice, she threatened to sue if the authors did not withdraw it. After receiving the threat, the paper’s corresponding author, Mariano Sica, told us that the authors immediately asked the journal to retract the paper.

We’ve written about similar cases where patients do not provide informed consent or withdraw it, but in this case we haven’t seen the threat ourselves.

We asked Sica if we could see the legal threat, and he said he couldn’t share it, explaining: Read the rest of this entry »

Authors couldn’t find a patient to give consent for case report. Then the patient found the report.

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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:

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Written by Victoria Stern

February 27th, 2017 at 9:30 am

Does a paywall protect patient privacy?

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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):

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Study of child with rare cancer retracted due to lack of parental consent

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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:

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Patient didn’t okay including her picture in plastic surgery paper

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indian-journal-of-plastic-surgeryA plastic surgery journal in India has retracted an article about rehabilitation following removal of an eye after a patient contacted the editors to say she hadn’t consented to publish her picture.

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 »

Study errors “may have placed you or your child at a greater risk of harm”: 2014 letter to parents

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Mani Pavuluri

Mani Pavuluri

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:

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

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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: Read the rest of this entry »