Over the last 30 years, forensic scientists have performed research on the hearts and brains of about 700 deceased Norwegian infants without seeking parental consent. An investigation by newspaper VG revealed the practice has gone on since 1984 in connection to Sudden Infant Death Syndrome (SIDS) and other research.
Permission was not requested for the research on the dead babies between birth and three years of age, because the Institute of Public Health (Folkehelseinstituttet) believed it would be too distressing for parents. The practice began in the midst of the 80s SIDS epidemic. Norwegian law requires relatives’ consent for hospital autopsies, but there is no clear legislation on forensic autopsies.
“If you have heard the cries of the parents who lost their children, then you will understand,” Professor Torleiv Ole Rognum told VG. “When we started the project we autopsied up to three toddlers a day, who had died of cot death. My driving force has always been to find the cause of SIDS.”
An autopsy is required following the unexpected death of a child. The toddlers investigated died from causes including SIDS, disease, accidents, health care errors and murder. Their body parts were removed, the cavities filled with silicone, then they were sewn up to look natural.
“We have launched a thorough investigation to clarify if some of the business is in violation of the law and what corrective measures eventually must be implemented,” said Bjørn Magne Eggen, a director at the institute.
The body parts are earmarked for studies until at least 2020. VG asked whether parents would now get the chance to consent or opt out of the research. “Yes, I have a great appreciation for that,” said Rognum. “I do not want us to perform research on material where the parents don’t want that themselves. But I have spoken with many parents who have lost their children, and none of them have been negative towards research.”