The practice came to light in December following a complaint filed with Sweden’s data privacy watchdog, the Data Inspectorate (Datainspektionen, DI).
The complaint focused on a particular case in which a baby was “diagnosed” as having “non-Nordic origins” (utomnordisk härkomst) even though the child’s mother was born in Sweden and its father was a Swedish citizen who had lived in Sweden since childhood.
The doctor who filed the complaint charged that the clinic, located in Västra Götaland in western Sweden, had violated Sweden’s Personal Register Law (personuppgiftslagen – PUL).
“As far as I know, this is not in accordance with PUL to register ‘origin’, that is, ethnicity for a person in healthcare, if there is not reason,” he wrote in his complaint.
He added that he suspected similar registers existed throughout the western Swedish region.
“This is deeply worrying and risks strengthening the mistrust between different groups of Swedes,” he continued.
When probed by data privacy watchdog, the county health board defended the practice by explaining the “non-Nordic” registry helped alert authorities to families that could belong to certain risk groups through travelling to countries where diseases might be prevalent, such as Tuberculosis or Hepatitis B.
There is also a high chance that family members from such countries will visit the baby in hospital, thereby increasing the risk of the child falling ill with one of these diseases, the board added.
However, health officials admitted that registering “non-Nordic” as a “diagnosis” in patient health charts was a mistake that occurred in the wake of a efforts to coordinate data between paediatric clinics and primary care clinics.
The health board claimed the “non-Nordic diagnosis” had only come up in the patient data system of one children’s health clinic. However, officials admitted that such “diagnoses” were a mistake that would not happen again.
The Data Inspectorate advised the board to improve and to clarify its procedures for how it records information when it comes to newborn babies.