Hobart father finds specimens from daughter's body may have been kept in museum without consent
It is a night Hobart father Alby* will never forget.
"My daughter passed away at the Royal Hobart Hospital on boxing day 40 years and five months ago at around 7.50pm."
He said he had been hit by a second wave of grief after finding out his daughter, who was two years old when she died, may have had specimens taken from her body during a coronial autopsy without the family's knowledge and stored in a pathology museum.
Alby regularly visits his daughter's grave in southern Tasmania.
The Tasmanian Coroner's Office announced in April last year that specimens had potentially been given to the R. A. Rodda Pathology Museum at the University of Tasmania without consent for 30 years.
The museum first raised concerns with the Coroner's Office in 2016.
The Coroner's Office said initial records indicated the collection of specimens started in 1953, stopped in 1985, and related to 147 people.
The office was able to identify some next of kin, but in January published a list of 126 names in newspaper advertisements and asked anyone related to any of the people named to contact the Coroner's Office.
The advertisement did not include any information about how affected family members could access support.
At the time, independent MLC Meg Webb criticised the office for its "blunt" handling of sensitive information.
After Ms Webb's concerns were raised, the webpage was updated to include the form families are asked to submit to provide information, details of support services, and information sheets to help people cope with grief and loss.
Alby has been in contact with the Coroner's Office about his daughter, but is yet to find out what specimens may have been retained from her body.
He has been offered a phone call and has been advised to have a friend or family member with him when he receives that call.
"I'm going to go through it all again."
Alby described the communication from the Coroner's Office to him as "heartless", and said a phone call was not enough.
"If they could just sit down and just feel the pain that we're feeling," he said.
"Then they'd probably understand what it's like, just to see the faces and see the health effects it's going to have on people for many years."
Ms Webb said it had been sad to see how the situation had affected many Tasmanian families.
"It's come as a real shock … and it's really brought up a lot of trauma for many families," she said.
"This is a highly unusual situation and it's come out of the blue.
"It really required incredibly sensitive communication with the families involved, and what we've seen is that some families have not felt that that communication has been as sensitive as it needed to be, and I think there's a lot to learn from this circumstance so we don't see this repeated."
Ms Webb said while the Coroner's Office was investigating how the remains came to be in the R. A. Rodda Museum's collection, further questions needed to be answered.
She also said there should be some form of public reporting with clear recommendations.
"We need to have some questions answered about how this happened, who was responsible and who should have had oversight over these circumstances.
Investigating coroner, Simon Cooper, said there was no known precedent in Tasmania of a notification to the Coroner's Office of this size.
"It has been and remains a significant task for the Coronial Division, whose staff have worked diligently and efficiently to progress the matter," Mr Cooper said.
"I wish to emphasise that, until they were reported, the existence of the remains were not known by present or previous coroners or staff of the Coroner's Office.
"Their removal at autopsy to be used as medical museum specimens were not at any direction or order of a coroner."
Mr Cooper said he recognised "that the discovery of these specimens has been a difficult and painful experience for many".
"The coroners and the staff of the Coronial Division work extremely hard to ensure coronial processes are properly, patiently and sensitively applied to this historical situation, whilst performing the required functions under the Coroners Act 1995.
"I anticipate publishing further information, in the form of a finding under the Coroners Act 1995 within the next few months, when all investigations are complete."
A spokesperson for the Coroner's Office said the office continued to manage "a number of inquiries" as the investigation continues, and that counselling support was being offered to family members who have come forward.
Health ethics and professionalism professor at Deakin School of Medicine Dominique Martin said ethical principals, standards and expectations in clinical medical practice — including the importance of consent — had evolved over the past century.
"But that's taken us several decades to get to, and if we look then at the removal of body parts … during life or after death, I think that's probably been a few decades behind that," Dr Martin said.
She said that until "very recently", and not just in Australia, there had been examples of body parts either being removed with permission or knowledge but retained and used for purposes without there having been any consultation with the patient, or, in the case of a death, the patient's family.
"That's, I think, been for a very long time considered normal in medicine and in scientific research."
Dr Martin said while there had been a "big change", it had been relatively recent.
"I suspect we're not done with finding out things that have happened in the recent past that we nowadays would be quite concerned about," she said.
"What matters is that they [patients or their families] have a choice in it, that they have control over that, and usually they have some knowledge of how things will be treated.
*Name has been changed
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