Poor communication blamed in organ retention report

Communication between doctors and the familes of deceased children who had organs removed and sold to pharmaceutical companies…

Communication between doctors and the familes of deceased children who had organs removed and sold to pharmaceutical companies between 1976 and 1988 was poor, the Madden report into post-mortem practices procedures has found.

Dr Deirdre Madden said doctors at the time had adopted a paternalistic approach which is "unacceptable by modern standards" but was considered acceptable at the time.

The report suggests one of the reasons doctors did not seek the consent of the parents of deceased children was to protect them from the details rather than insult them..

The report concludes that post mortems were carried out to the highest professional and international standards but that there was no legistlative framework and no consistent national policy relating to the practice of retaining organs.

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Regarding the supply of pituitary glands to two pharmaceutical companies for the production of human growth hormones Dr Madden found that 14,000 glands were supplied by 26 hospitals between 1976 and 1988.

The two companies, Pharmacia Ireland Ltd and Novo Nordisk A/S, received approximately 1,400 glands from children, but the report finds that hospitals did not supply them for commercial gain. The sum paid was £1.50 in 1978 rising to between £3.00 and £3.50 in 1985.

The report also criticises the response of health boards and the Department of Health and Children once the media broke details of the practices in 1999.

"Though the hospitals defend their responses on the basis that they were unprepared, and the controversy was unprecedented, that information was not readily available, and that records were poorly maintained, the effect on the parents was an additional trauma that perhaps could have been avoided or minimised by a more centralised leadership from the health boards and the Department of Health and Children."

It also finds that the Department did not see itself as having any role or function in relation to regulation of post-mortems until the controversy arose in 1999.

Dr Madden makes a total of 50 recommendations that if implemented would require legislation and action from a number of Government Departments.

The primary recommendation is that legislation should be enacted to ensure that "such practices cannot happen again in the future without their knowledge and authorisation."

She recommends that consent should be given by means of authorisation rather than informed consent, whereby parents would engage in a process that would see them receive ongoing information on the procedure and its results.

Dr Deirdre Madden, a medical lawyer, was called in last May by Ms Harney to examine the incomplete findings of the Dunne Inquiry.

The Dunne Inquiry, which ran to 3,500 pages and cost €20 million, was wound up by the Government last year.

Madden's report cost €450,000 to produce and Ms Harney said it could act as a template as to how future reports of this nature could be produced.

The Minster for Health received Dr Madden's report in December and it was discussed by the cabinet this morning.

The Tanaiste said while she could not predict the response of parents' groups, she believed most people who read the document would see that it was sensible and forward-looking.

The HSE is launching a helpline for next of kin effected by the issues raised in the report which will be launched tomorrow and can be reached at 1850 241 850.