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Dáil Éireann debate -
Thursday, 24 Feb 2000

Vol. 515 No. 2

Ceisteanna–Questions. Priority Questions. - Organ Retention Inquiry.

Alan Shatter

Question:

1 Mr. Shatter asked the Minister for Health and Children the plans, if any, he has to broaden the proposed inquiry into the retention of organs, glands and tissue of deceased children and their disposal without parental consent by Our Lady's Hospital for Sick Children, Crumlin, Dublin 12, to an inquiry into retentions and disposals without appropriate consents by all hospitals. [5519/00]

Liz McManus

Question:

2 Ms McManus asked the Minister for Health and Children when the terms of reference of the proposed inquiry into practices relating to the retention of children's organs following post-mortems will be finalised; the individual who will carry out the inquiry; the hospitals which will be covered by the inquiry; the consultations, if any, with parents of the children concerned; the plans, if any, he has to introduce legislation to regulate the handling of human tissue; and if he will make a statement on the matter. [5628/00]

I propose to take Questions Nos. 1 and 2 together.

The Deputies will be aware that I, and my predecessor, have met with Parents for Justice on a number of occasions. I have learnt at first hand of their trauma and distress on discovering that the organs of their children had been removed and retained, and in some cases disposed of, without their knowledge or consent.

I want to place on record my sincere regret and offer my sympathies to all those parents affected for what has happened. My primary concern to date has been to ensure that parents and families affected by the recent disclosures receive all necessary support, including where appropriate independent counselling services. This is in addition to the support which has already been put in place by the hospital, the Eastern Regional Health Authority and other health boards.

The Deputy will also be aware that on 9 February 2000, I announced my intention to hold an inquiry into issues relating to post-mortem examinations, organ removal, organ retention and organ disposal at Our Lady's Hospital for Sick Children, Crumlin, the national centre for paediatric cardiac surgery. Since then I have been in consultation with a number of parties, including the Attorney General regarding the terms of reference, scope and form of the inquiry. Indeed, I met with Parents for Justice again yesterday evening to update them on progress in relation to the establishment of the inquiry and to listen to their views on the subject.

It is now apparent that the practices and procedures followed by Our Lady's Hospital for Sick Children, Crumlin, in this area were not confined to that hospital. While I have yet to finalise the terms of reference for the inquiry, I can assure the Deputies that the inquiry will provide for a review of post mortem policy, practice and procedure in the State since 1970 and, in particular as it relates to organ removal, retention and disposal by reference to prevailing standards both inside and outside of the State, as well as an examination of the application of these policies, practices and procedures in Our Lady's Hospital for Sick Children, Crumlin. I also intend that the inquiry will be empowered to examine any specific cases in any hospital in the State as it deems appropriate.

I anticipate that the terms of reference of the inquiry will be finalised in the very near future and I am concerned that it should commence as speedily as possible. While I appreciate that guidelines covering post mortem practices have recently been issued by the faculty of pathology, the outcome of the inquiry will also influence future policy and practice in this area. I also intend to establish a working party to advise on any legislative requirements in this area and in particular on the updating of the existing legislation regarding human tissue.

A decision has not yet been taken on the person or persons to conduct the inquiry. I consider this matter to be of major importance and I am concerned that the issues arising should be addressed in a way which will have full regard to the sensitivities of the parents and families concerned. In all the circumstances, therefore, and particularly in the best interests of all the families affected, I consider it best to refrain from commenting on the detail of the allegations and so forth which have been made and, in that respect, await the outcome of the inquiry.

Will the Minister acknowledge that it seems the removal of organs, tissue and glands without parental consent, sadly, occurred not only in Crumlin children's hospital but also in Temple Street and other hospitals in the State? In the circumstances, will he acknowledge that the inquiry, which should now be conducted, should be broader than simply an inquiry into Crumlin children's hospital?

Does the Minister accept it is crucial that the fullest information is available to ensure the inquiry reaches conclusions based on the facts of what occurred and that it has the most comprehensive information available to it? In that regard, will the Minister acknowledge that the most appropriate form of inquiry is a statutory one which gives the person or persons appointed to act in the inquiry specific powers to gain access to all relevant information so as to ensure no difficulty arises?

Will the Minister acknowledge that there is a need to put in place a new legislative and regulatory framework to ensure a considered, sensitive and appropriate approach to post mortem issues and to organ retention? Will the Minister indicate what progress, if any, has been made in considering the type of legislation necessary not only confined to issues relating to the Coroner's Court but also legislation necessary to address this area in circumstances in which the coroner is not called in?

As I indicated in my reply, it is envisaged that the terms of reference for the inquiry will embrace more than Our Lady's Hospital for Sick Children, Crumlin, and that practice generally throughout the country will come within the remit of the inquiry. On the facts, records and so on, it is important the inquiry has access to all records in the hospitals and that all information in the hospitals concerned will be made available to the inquiry.

On whether we take a statutory or non-statutory route, it is a matter on which I am reflecting. I do not necessarily accept that the statutory route is the only one to ensure we have access to all the documentation or co-operation from all concerned. There is a number of considerations and I discussed this yesterday with Parents for Justice. Their legal representatives made it clear to us that they were looking for a statutory inquiry. The length of time the statutory inquiry would take to establish and, indeed, could potentially take to conduct its activities is a matter of concern to me. There is much trauma arising out of this issue. It is important we genuinely look at how the format of an inquiry will impact on people. The duration in that sense is an issue. At the conclusion of yesterday's meeting, I said I would take on board what the legal representatives and Parents for Justice said in regard to their concerns on that issue.

We have been promised full co-operation from all parties concerned and it is an issue which we will obviously have to finalise in terms of further consultations between the groups concerned, in particular Parents for Justice, and the Attorney General. We can tease out these issues further if the Deputy wishes but I do not accept that the only way forward is via a statutory inquiry. That has other difficulties as well.

I accept there is a need for a legislative framework in relation to human tissue generally. I intend to set up a working party with people who have particular expertise in this field to set about preparing proposals for a human tissues Act.

I welcome the Minister's decision to set up an inquiry. It is very important in addressing the anguish which has been expressed by so many parents on this issue. I expected more progress in terms of outlining to us how and when the inquiry would be established. Will the Minister outline whether he is talking about one, two or three months? What type of time frame is he talking about? I do not intend to hang it around his neck but it is important people have some time frame no matter how broad.

Is the Minister satisfied that current practice in relation to organ retention is appropriate and is standard throughout all hospitals? While I welcome his general view on legislation, I presume he is aware an extensive case has been made on the drawing up of legislation on the handling of human tissues. There is a concern that setting up a working group is extending the time unduly. Is he not satisfied that, between the Department of Justice, Equality and Law Reform, the work being done by the coroner's review group and his Department, there is sufficient expertise to set about drawing up the legislation given that other jurisdictions appear to have been able to do so? The undue delay is a matter of concern, particularly to professionals working in the field who want to do things properly. At the moment there is a lacuna which should be filled.

We have made fairly quick progress. I met with Parents for Justice twice. At the first meeting they were genuinely surprised when we told them we were going to have an inquiry. Obviously it was too early at that stage for both them and others to reflect on the nature of that inquiry. We made a commitment to consult again with the groups, in particular with Parents for Justice, before we come to any definitive conclusions. It is not a secret that yesterday's meeting concentrated on whether we should have a statutory or non-statutory inquiry. The legal representatives present argued strongly in favour of the statutory inquiry model, while I made strong arguments in favour of the advantages of a non-statutory inquiry. I gave a commitment to reflect on the content of yesterday's meeting. In that regard, I am not talking about months but weeks.

From my experience in the Department of Education and Science of setting about establishing the commission of inquiry into child abuse, I am confident that will be achieved with the best efforts of everyone involved. We gave a commitment to set up a statutory inquiry in May of last year and it will be in place and on the Statute Book in approximately 12 months. That legislation is currently going through the House.

These are issues about which we should inform people before we take decisions. That is why the expected time frame of not only the establishment of the inquiry but its duration is an issue not only for Parents for Justice but for parents generally.

The faculty of pathology has issued guidelines to inform current practice. We have written to each health board and hospital on the issue of informed consent. The faculty's guidelines, which were issued only recently, will inform current practice.

In terms of the working party, there is a fairly comprehensive legislative programme within the Department's area of responsibility. I would be concerned about our capacity to deliver on all of that. In this area in particular some work has been done on coroners, post-mortems and so on and we can use that, but to get it right by putting in place a comprehensive legislative framework, the prudent approach is to establish a working party with people of sufficient expertise who can quickly bring proposals to the table. Some people consider that is procrastinating on the issue, but I do not. I give a commitment to the House that the working party will not have an unduly long period within which to submit its proposals and a template for legislation. It might help to fast-track the process.

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