Parents ‘must not suffer like this again’
The damning report, published yesterday, calls for the urgent introduction of legislation to ensure that no post mortems of deceased children take place without the full authorisation and knowledge of parents.
Tánaiste and Health Minister Mary Harney welcomed the report as “robust” and said she accepted its emphasis on full authorisation from parents. She promised legislation would be drafted quickly and all 50 recommendations would be implemented.
The 140-page report authored by UCC law lecturer Dr Deirdre Madden - an expert on medical ethics - concludes that a paternalistic and ‘doctor knows best’ culture within the medical profession resulted in a failure to inform parents that the organs of their children were removed and later disposed of; or, in some cases, that pituitary glands were sold to pharmaceutical companies manufacturing growth hormone.
“The grief and anguish suffered by parents who discover that their children’s organs had been retained (and disposed of) was caused by a failure by medical professionals to openly and honestly communicate with parents at the time of death.”
Parents for Justice, the group representing 1,000 family members, criticised the report. In a flat rejection, the group said it failed adequately to answer their questions. Spokeswoman Charlotte Yeates said: “This was a flawed report from the outset as it didn’t involve still-born children, minors or adults. The Tánaiste has indicated that this report answers the questions of parents and next-of-kin, but it is (our) view that it is fundamentally flawed and fails to do so.
“This report is a review of a limited number of documents. The Government sought to curtail a proper investigation by setting up alternative structures, which is a reading of a cold set of documents.”
Fine Gael, Labour and the Green Party criticised the Government’s handling of the scandal, the absence of legislation, and the long delay in producing the report.
Dr Madden was called in last March to complete the investigation after the Dunne Inquiry was wound up without concluding its investigations. It had taken five years and cost an estimated €20 million.
The report also criticises the Department of Health for having no policies on post-mortem practices until after the first Irish organ retention case was reported in 1999; its slowness of response to the controversy; and its failure to adequately reassure the public.
Describing the absence of legislation in this area as “highly unsatisfactory”, the report finds the department was aware since 1976 that pituitary glands were being sold to pharmaceutical companies, but had never raised the issue of consent.
It finds that the “the root causes of the controversy” was a lack of communication with parents, the difference in perspective (between doctors and families) as to the symbolic significance of organs and the “legislative vacuum on the role of consent in postmortem practice”.
It states paternalism was very much part of the culture of the profession until the 1990s but was unacceptable by today’s standards.
