A patient advocate is demanding a retraction of a JAMA Neurology study dismissing a mystery brain illness in New Brunswick, citing privacy and bias concerns.
Report on Brain Illness Faces Pushback
A recent study dismissing the existence of a mystery brain disease in New Brunswick has sparked controversy, as a Canadian patient advocate demands its retraction. Katherine Lanteigne, a former executive director of BloodWatch, alleges research bias, lack of informed consent, and privacy violations in the study published last month by JAMA Neurology.
Allegations of Bias and Misconduct
The disputed study, led by neurologist Dr. Anthony Lang of Toronto’s University Health Network (UHN), reassessed 25 of 222 patients originally diagnosed with a “neurological syndrome of unknown cause” by Moncton neurologist Dr. Alier Marrero. The study concluded all 25 had established conditions such as Alzheimer’s, Parkinson’s, or brain injury.
In letters to UHN and the Horizon Health Network, Lanteigne alleges that five co-authors failed to disclose prior involvement with the patient cluster, undermining claims of independence. She also accused UHN of violating research ethics and patients’ privacy by using data without proper consent.
Consent Dispute and Patient Identification
One key concern involves Gabrielle Cormier, 23, whose data was included despite her having declined participation, according to her stepmother, Stacie Quigley Cormier. While Gabrielle is not named, her family says the details clearly refer to her. UHN has reportedly acknowledged this in email correspondence, prompting the family to also demand an apology and retraction.
Lanteigne says up to seven patients were included in the study without family consent, and she has asked the Public Health Agency of Canada (PHAC) to investigate the release of case data from the federal Creutzfeldt-Jakob Disease Surveillance System.
Study Defended by Authors and UHN
In response to criticism, UHN said the study was peer-reviewed and approved under federal ethical guidelines. “All of its clinical research studies undergo rigorous oversight,” said spokesperson Ana Fernandes, adding that the study met scientific standards and respected privacy laws.
Co-author Dr. Gerard Jansen defended the study’s independence and methodology, denying privacy breaches and bias. He stated consent was obtained “where possible” and waived in other cases per national research standards. Jansen dismissed the allegations as “utter nonsense.”
Broader Context and Ongoing Debate
The controversy revives a years-long debate over the possible existence of an unknown neurological illness in New Brunswick, first flagged by Marrero and other physicians in 2020. While earlier provincial and federal investigations have attributed symptoms to known illnesses, Marrero and Lanteigne maintain that hundreds of cases remain unexplained.
Lanteigne has reviewed nearly 30,000 pages of documents through access-to-information requests and insists the study undermines patient dignity and public trust. Marrero, in a statement, also raised concerns over the lack of consent and said he was never informed of the publication involving his former patients.
Government and Medical Community Response
PHAC confirmed it was not involved in the study and, based on current information, has found no breach of privacy protocols. However, spokesperson Anna Maddison said the agency takes concerns seriously and continues to review the matter.
As debate continues, calls for transparency and accountability grow louder, highlighting tensions between independent scientific review and patient rights in high-profile medical investigations.
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