Chinese medical case study erased after guardian consent withdrawn

JMCRThe editor of the Journal of Medical Case Reports, a BioMed Central title, has retracted and removed a case study of a novel surgical treatment after the patient’s legal guardian withdrew consent post-publication.

The paper, “Novel two-stage surgical treatment for Cantrell syndrome complicated by severe pulmonary hypertension: a case report,” describes the treatment of a six-month-old Han Chinese girl suffering from a rare combination of birth defects called Cantrell syndrome, complicated by pulmonary hypertension.

The original article, published in March 2014, has been removed from the journal’s website, though the abstract can be read on PubMed. It is unclear whether the authors, the child’s guardian, or some other party informed the editor of the withdrawal of consent.

The brief notice offers few details:

This article has been retracted by the Editor. Although the patient’s legal guardian originally gave consent for publication of the case and accompanying images, we were informed that they withdrew this consent shortly after publication. The article is no longer available online in order to protect patient confidentiality.

The editor-in-chief of the journal, Michael Kidd of Flinders University in Australia, declined to share any additional details, simply stating:

The retraction note says everything that needs to be said.

The removal of data for lack of consent reminds us of when the HeLa genome sequence was taken offline because the family of Henrietta Lacks had not agreed to publish it. In another instance, the journal and authors apologized to a family that objected to a case report, but didn’t retract it. In this case, we do not know why the legal guardian initially gave consent but then withdrew it.

We have contacted corresponding author Jinbao Zhang of the Chengdu Military General Hospital in China, and will update if we receive a response.

Hat tip: Rolf Degen

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One thought on “Chinese medical case study erased after guardian consent withdrawn”

  1. Interesting case. I do hope that the authors did have a valid written informed consent to begin with. Assuming that, in the good old days of paper publishing the authors would have simply explained to the guardian that the consent is not retractable, because the paper is in print and the journal has been sent out to all subscribers, period.

    But this is a very interesting subject for medical ethics. Case reports and studies that include photos of subjects are very common. Do subjects actually have a right to withdraw consent for publishing personal information even after it has been published? And how far does this right go, retract, delete, tear out the respective pages out of the journal from every subscriber?
    In cases of subjects not able to give consent (esp. children), do they have a right to withdraw consent given by a guardian once they reach an appropriate age?

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