Scientific misconduct at Norway’s national gender incongruence clinic
Five researchers at Norway’s national gender incongruence clinic have been found to have committed “gross negligence” and scientific misconduct due to publishing four studies using the medical records of well over 1000 minors without patient consent.
Rikshospitalet is the seat of the Norwegian national gender incongruence clinic. Photo: Kjetil Lenes, Wikimedia Commons
Claims scientific research was purely quality assurance
A joint research ethics committee at the University of Oslo and Oslo University Hospital (OUS) recommended that two articles were to be retracted on the basis of scientific misconduct for using the patients’ medical records without ethics approval or patient consent.
Retraction Watch has written a comprehensive article in English about this case
The five researchers at OUS found to have committed “gross negligence” are all linked to the National Center for Gender Incongruence, Norway’s only state provider for gender-affirming care. They are pediatrician Anne Wæhre, child psychologist Trond Diseth, head of the adult unit at the institution Kjersti Gulbrandsen, and Ph.D. candidates Cecilie Bjertness Nyquist and Linda David.
The researchers maintain that despite publication in scientific journals, their work was exempt from patient consent as it was purely intended as quality assurance. The ethics committee found conclusively that their work was research, and therefore subject to the mandated patient consent regulations.
Two other articles did not reach the threshold for misconduct, but the committee found that they violated research ethics standards in a “reprehensible” way.
One of the four articles has already been retracted.
– Planned and conducted to bypass ethics review
Frende Lorentzen is the democratically elected leader of the Norwegian patient organisation for gender incongruence (PKI/POGI), representing many of the patients who have been subjected to unethical research by the staff at the Oslo University Hospital. They find the ethics board to have been lenient in their evaluation of the researchers’ actions.
“We do not agree that the researchers are only guilty of gross negligence,” Lorentzen says to Retraction Watch, who has written a comprehensive article in English about this case.
“In our view, it is clear that they planned and conducted the project specifically to bypass ethics review and approval, and to avoid asking research participants for consent.”
As far as PKI has been informed by members subjected to the malpractice, the hospital has not yet officially contacted the patients whose information was published to inform them of the violation.
The aforementioned researchers still maintain access to patient records, and are still allowed to practice medicine with the same patients towards whom they have been found to have committed unethical scientific malpractice.
“It is incredibly disappointing that our members are still expected to show up to appointments with the involved persons,” Lorentzen says to Retraction Watch.
