They called it organ retention, but it was more like robbing the dead
Their children's organs were surreptitiously acquired for medical purposes.
The agony which parents felt on discovering that their children's organs had been effectively stolen was summed up this week by one father whose two-year-old daughter died in Our Lady's Hospital for Sick Children in 1982. He and his wife allowed a post-mortem examination be conducted in good faith.
"It seems that every organ they looked at, they kept. As far as we are concerned, they plundered her body."
What is patently obvious, though, is that the general public would still be in ignorance of the practice, and its extent, without the persistence of the Parents for Justice (PFJ) group.
About 32 hospitals have now admitted indulging in it. The practice was going on for decades, and when it was exposed it was - and still is - euphemistically described 'organ retention'. It would be more appropriately called an act of robbing the dead.
Because of the secretive way it was conducted, it has taken on the appearance of a science fiction horror story.
The Government's response to the inevitable public outcry when it was exposed was to set up an equally secretive investigation - the Dunne inquiry, which has been conducted in private for the past three years.
To date, it has cost the taxpayer €15 million, and so far it has only produced a report which contained limited detail relating to administrative matters.
From a public perspective, it is difficult to see what it is supposed to achieve. It is cocooned in secrecy and those parents expected to give evidence would be gagged by a secrecy clause from going public with their stories.
In case the culture of secrecy wasn't enough to frustrate angry parents who are seeking the truth, it was convenient that the Department of Health had a policy of destroying hospital records because of lack of space - officially.
It is hardly surprising that the PFJ withdrew from the inquiry in frustration after only six months.
When the group withdrew in October 2002, it demanded that a statutory inquiry be set up which could compel witnesses to attend and make orders for the discovery of documents.
No such inquiry was set up. The obvious conclusion is that bureaucracy finds it more expedient to spend millions of euro to obfuscate the truth rather than allow it emerge.
Government policy would seem to set more value in protecting vested interests than delivering justice to thousands of families who have been wronged over the past 30 years.
Instead, the PFJ has been preparing test cases for the High Court, the first of which are expected to come to hearing early next year.
Pharmacia Ireland has admitted that its predecessor, Kabi Vitrum Ltd, had reimbursed pathologists and hospitals for the work involved in removing the pituitary glands needed for making a growth hormone, but did not say how much money was paid.
And a Danish company, Novo Nordisk, has admitted getting glands from dead patients from more than 30 suppliers.
Despite denials that the covert acquisition of organs was not motivated by profit, PFJ chairwoman Fionnuala O'Reilly is convinced it was.
Ironically, given the positive attitude to organ donation these days, the probability is that those parents would have consented to the use of the organs had it been explained to them what good their actions could have done.
But there is a culture in this country that the establishment - whatever shape it takes - does not have to justify its actions and, in any case, knows best.
THE culture is evident in many aspects of Irish society, one of the most recent glaring examples being that of the North-Western Health Board, which decided to spend an unauthorised €9.5 million on a new headquarters.
Seemingly, it was deemed more important to spend the money to make executive bums more comfortable despite the fact that brand new facilities in hospitals in Donegal and Sligo cannot be opened to patients because of lack of money.
Apart from the fact that that kind of money would provide badly needed essential services for patients, instead of luxurious offices for administrators, this farce also highlights the scant regard there is for taxpayers' money.
Originally, the plan was to alter and extend the existing building at a cost of €900,000, but somewhere along the way the plan was inflated by 10 times that amount.
So what? It's only taxpayers' money! It's not as if the senior executives were paying for it out of their own pockets. The Department of Health did not approve the construction of the building or a loan to pay for it.
Apparently, this maverick project was discovered by the Comptroller and Auditor General (C&AG), who is usually described as the taxpayers' watchdog and who keeps an eye on how the Government and its agencies spend - or squander - public money.
According to his special report into the Co Leitrim headquarters, the health board did not appear to have firm arrangements in place to fund the expenditure, and health boards need the consent of the Minister for Health to borrow money.
One of the extraordinary features of this outrage is that the department now claims it knew nothing about the splurging of this huge sum until 2001 - three years after the plan was mooted.
It would appear that it wasn't until the NWHB sought approval for a €8.2m loan that the department copped on.
Strange, isn't it, that an organisation which is directly the responsibility of the department should be able to engage on such a massively unauthorised project without any of the well-paid civil servants - or the minister - knowing anything about it.
And despite the fact that the C&AG is very effective in discovering embarrassing examples of Government financial excesses, the possibility is that while the minister may rap some knuckles, nobody will be fired and the health board will get its new headquarters.
Well, that's not quite all that will happen. A Dáil inquiry into the health board's extravagance will be conducted by the Public Accounts Committee - as soon as the members return from their excessively long summer holidays.
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