The Northern Ireland Human Organs Inquiry provides a sharp contrast with the Dunne Inquiry in many respects, writes Carol Coulter, Legal Affairs Correspondent.
In Northern Ireland a report on the retention of human organs by hospitals was completed in 15 months. It cost £405,867 (about €600,000). All 20 of its recommendations have been implemented or are in the process of being implemented.
The inquiry was set up by then minister for health, social services and public safety Bairbre de Brún, in March 2001. It had three members: chairman, John O'Hara QC, barrister and director of the Children's Law Centre Paddy Kelly BL, and professor of social policy from Queen's University Eithne McLaughlin. Prof Peter Vanezis, a pathologist from the University of Glasgow was its specialist adviser, and its investigating solicitor was Alex Coleman.
Three staff, including the secretary to the inquiry, Andrew Browne, were seconded from the department. It was set up under a 1972 Social Services Order, and was therefore a statutory inquiry.
The inquiry arose from widespread public disquiet in the UK and Ireland about port-mortem practice. In the words of the report, "there was a gulf between what the public knew and was told about procedures and practices on the one hand, and what was actually happening on the other, [ leading to] a legacy of distress and anger among some members of the public . . . One result is that fewer people are consenting to post mortems."
The report acknowledged that the team had the benefit of parallel reports on the controversial issues of organ retention from Alder Hey hospital in Liverpool and from Scotland. These reports would also have been available to the Dunne inquiry.
A Relatives Reference Group, chaired by Pip Jaffa, was also established, and continued after the inquiry finished its work. It dealt directly with relatives, and fed their experience back to the inquiry. Since the ending of the inquiry it has been involved with relatives in arranging memorials to their loved ones, including a stained-glass window in City Hall, Belfast, and a sculpture in Ballyoan cemetery, in Derry.
The terms of reference of the inquiry were: to review past and present post-mortem policy and practice, in hospitals and among professionals, with a particular focus on organ retention; to consider the appropriateness of practice in obtaining consent; to take account of both the UK inquiries and the Dunne inquiry, set up a year earlier; to examine policy and practice on the disposal of human material; to examine the responses of hospitals to the relatives of children affected by post mortems and organ retention; and to make recommendations to the minister within 12 months. In the event, because evidence from one hospital came late, the inquiry sought, and obtained, a three-month extension and reported in June 2002.
These terms of reference are very similar to those of the Dunne inquiry although the Dunne inquiry's terms of reference covered the retention of material from all post mortems in the State's major hospitals, not just paediatric hospitals.
The human organs inquiry set up office in central Belfast. According to its secretary, Andrew Browne, inquiry members were paid "the going rate" for the hours they put in, but not a monthly salary or annual fee. He pointed out that the total cost of the inquiry, which lasted for 15 months, was just more than £400,000 (€582,000).
Its 83-page report details the meetings it had with members of the public, staff in the health service, department officials and relatives' groups. It also met research and development committees, ethics committees and coroners, and liaised with the similar inquiries in England, Scotland and the Republic. It carried out an in-depth study of six specific cases brought to its attention because they exemplified the range of problems covered by the terms of reference.
Written evidence was gathered by public advertisements and by writing to relevant organisations. Oral evidence was collected in a series of meetings, both with individual relatives and through a series of public meetings.
Under the heading "transparency and openness" the report states that the inquiry maintained a website on which background information was maintained, as well as progress reports, anonymised questionnaires, transcripts of evidence from hospitals and the public sessions, and links to related sites. It also stated: "The inquiry has sought to be open in its relations with the media. The chairman has given interviews to television and radio stations and to local newspapers."
The report outlines the reasons for post mortems, and the benefits to both relatives and the wider community that derive from them. It stresses that the relatives did not question the benefits, but had expressed concern about five main issues: the way in which they were treated at the time of bereavement and the way in which consent was obtained; the removal of tissue without the knowledge of the family; the retention of organs and tissue without their knowledge; the disposal of them without their knowledge, often in hospital waste; and the way in which requests for information were dealt with.
THESE CONCERNS MIRROR most of those expressed by Parents for Justice, the group representing the families of those similarly affected by the practice in hospitals in the Republic.
The Northern report goes into considerable detail about the existing state of the law, particularly in relation to consent. The law in question was the Human Tissue Act of 1962, which, obviously, did not operate in the Republic. The inquiry found this law lacking in relation to the issue of consent.
Nonetheless, it comments: "We believe that the analysis that consent had not been properly obtained . . . reflects current practice in Northern Ireland and beyond", and goes on to recommend changes in the practice as well as the law concerning obtaining consent.
The report covers areas such as the retention and storage of organs and tissue, often for long periods; the manner in which consent to post mortems was obtained; and the way in which inquiries from relatives were dealt with in the wake of the Alder Hay controversy. It also examines the record of individual hospitals in some depth, and then looks in detail at the six case studies already referred to. It does this without identifying the families involved.
It examines current practice, showing how it improved after 2000, when the scandal about organ retention broke in Britain.
Its recommendations include the repeal of the 1962 Human Tissue Act, and its replacement by a new Act, detailing guidelines on obtaining, using and disposing of human tissue and a public information and education campaign.
The population of Northern Ireland is only one third that of the Republic, and it has proportionately fewer hospitals and medical professionals. The system is different, in that Northern Ireland had a unified National Health Service, while the Republic did not, having instead a number of hospitals with different managements.
Nonetheless, the culture and practice of medicine is not significantly different in the two jurisdictions, as witnessed by the fact that doctors and nurses routinely train and work in both Ireland and the UK. It is reasonable to suppose that the problems that arose with post mortems and organ retention, especially in paediatric medicine, were similar in both jurisdictions. It is equally reasonable to imagine that the experience of the Human Organs Inquiry in Northern Ireland would have been useful and instructive for the equivalent inquiry in this jurisdiction, and could even have assisted in reducing its work.
Perhaps it did. We simply do not know. Because, five years after the decision to set it up, there is still no report from the Post-Mortem Inquiry; we do not know what has informed its work and what experience from other jurisdictions it has been able to draw on.