Madden report: An independent audit of all organs currently retained by hospitals across the State is now to take place, and the next of kin of those from whom the organs were taken will be given an opportunity to reclaim them if they wish.
The move follows the publication yesterday of a report on the retention without consent of organs by Irish hospitals during postmortems over many years going back to the 1970s.
The report, by law lecturer Dr Deirdre Madden, found the failure to inform parents was "not due to personal or individual misconduct, but rather to a system and culture that failed to take into account the views and feelings of parents" at the time.
"That was how things were, not only in Ireland but also in other countries," it said.
The controversy over organ retention emerged in 1999. The report says: "There are lessons to be learned from this controversy. There has been a breakdown in communication and consequently in trust and confidence between parents and medical professionals. This will not be resolved by blame."
Dr Madden also says that when the organ retention controversy arose, "more could have been done by the Department of Health and Children to reassure the public that although families were rightly concerned about the lack of consent for retention, the practices themselves were in line with best international standards".
At the publication of the report yesterday Minister for Health Mary Harney apologised for the hurt caused to parents by the controversy and said the report may drag it all up again for them. A helpline - 1850 241 850 - has been set up for those affected.
She promised to enact legislation, called for in the report, to ensure that in future organs will not be removed without the consent of the deceased's next of kin. "Penalties must be imposed for non-compliance with these safeguards," the report said.
While Dr Madden's report deals only with the retention of organs from children under 12 who were born alive, a working group is being set up to see how its recommendations can be applied to other age groups.
The report details how 26 hospitals retained 13,929 pituitary glands between May 1976 and October 1988 and supplied them to two pharmaceutical companies, Kabi Vitrum and Novo Nordisk, for the manufacture of a human growth hormone. Some 10 per cent of these would have been harvested from children.
The Department of Health, it said, was aware of the distribution of a growth hormone to Irish patients since 1976 but raised no concerns regarding the issue of consent for the extraction and supply of the glands used for its manufacture until 2000.
It states the payment per gland in 1978 was £1.50 and by 1985 it was between £3 and £3.50.
Dr Madden said there was "a paucity of documentation about the matter". She found those retaining the glands did not intend to cause harm or distress, and some hospitals regarded it as a "humanitarian act" given that it was the only way to make human growth hormone. She concluded the amounts that changed hands were modest and were not a payment for the glands but for the additional work required in their recovery and storage.
"On the evidence to the inquiry, pathologists did not profit personally in any manner from the supply of the pituitary glands to the pharmaceutical companies."
Some parents told the inquiry they were never even told a postmortem would be done on their child. One family said they were only told the child would have "a blood test". Most commonly, when parents were asked for consent to do a postmortem, they were asked in a hospital corridor.
After a postmortem "one set of parents recalled holding the child and questioning how light the body was. When this was queried with the staff, the parent was told she was mistaken and that 'babies lose fluid'." Other parents recalled receiving a casket with their dead child after a postmortem and being told to leave the hospital by a side door.
Dr Madden's report states that there was generally no record kept of organ disposal by hospitals and in some cases organs were stored for a number of years instead of being disposed of "probably due to administrative oversight".
Methods of disposal used were burial and incineration.