I call on the Minister for Health and Children to set up an urgent inquiry into the circumstances where a letter was sent to 100 parents and guardians of 100 residents of St. Ita's Hospital, Portrane, asking for permission to carry out medical experimentation on those 100 residents. Parents receiving this letter were very frightened by its contents and appalled at the lack of information in it. The wording of the letter implied that the study was a fait accompli and that the parents' permission should be returned as soon as possible. The first sentence of the letter states: “We are conducting a study on bone metabolism.” It does not say “we intend” or “we might”; it says “we are”. The letter was written on Eastern Health Board notepaper with St. Ita's Hospital's address on it. It referred to 50 of the residents receiving medication with vitamin D given by injection and calcium given orally. It also indicated that blood testing would be done initially and again at three, six and nine monthly intervals. No indication was given who would be involved in the study other than the doctor who signed the letter. No indication was given that neither the hospital ethics committee nor St. Ita's Hospital Management Committee had not considered the proposal. Having read the letter, if I was a parent of a mentally handicapped person who themselves could not give any informed consent, I would have been very angry at the lack of information, the suddenness with which the letter arrived without any prior consultation and the peremptory way the last sentence in the letter was worded. It states “please return permission as soon as possible.” My reading of that sentence is that there is no indication to a vulnerable parent that they have a choice in the matter.
I recognise that medical testing is a valuable tool in improving people's conditions and medical knowledge. I understand that the particular doctor who sent this letter has given great care to the residents in St. Ita's. However, the hurt and trauma caused by this letter is enormous and the Minister for Health and Children has the overall responsibility for running our hospitals and must take responsibility for this letter.
The Eastern Health Board has issued statements regretting any anxiety which has been caused to clients with learning disabilities in St. Ita's Hospital but the board also tried to disown the trauma caused by implying that the Irish Council for People with Disabilities misrepresented or misunderstood the nature of the letter. This is a very unfair interpretation of the statement by the Irish Council for People with Disabilities and I ask the Eastern Health Board to apologise to the council for implying that it was their fault people have been upset by this letter. The health board has issued a statement indicating that these tests will not go ahead and I know this decision is welcomed by the council.
It is not clear whether this is the first time a group of mentally handicapped people was to be used for medical research. I want to know if this kind of testing has been carried out in the past. What are the legal parameters about medical testing of human beings? Is the Minister aware that many of the mentally handicapped people in St. Ita's Hospital do not have parents or guardians? Who was going to speak on their behalf and give permission? One parent has indicated that it would have taken three people to hold down her son to have an injection administered. Another parent has indicated that it would take eight people to hold down their mentally handicapped child. What would have happened if a parent had given consent to have these tests carried out and the person on whom the tests were being carried out resisted very strongly? How far would those carrying out this research have gone to administer medication?
The Irish Council of People with Disabilities has requested the Minister for Health and Children to ascertain through a full investigation a number of matters. Who initiated this study? Who authorised it? What is its real purpose? Are any other medical experiments proposed, contemplated or recently undertaken in respect of citizens with disabilities in the Eastern Health Board's care?
I call on the Minister to have this investigation carried out as quickly as possible so that a similar situation will never arise again. I ask him to take whatever action is necessary arising out of the investigation to clarify to the parents of these residents exactly what went wrong here.
I urge the Government to make resources available to upgrade the facilities in St. Ita's Hospital. The care given to the residents in St. Ita's is exemplary, as is the staff, but the building is old and requires much renovation and improvement. I call on the Government, which can find money so easily for so many high profile projects, to increase the allocation to the Eastern Health Board so that money can be spent upgrading facilities in St. Ita's Hospital. A Minister of State has visited the hospital and I hope that this is not just a public relations exercise because there is a by-election in Dublin North. The needs of the people living in St. Ita's and the staff are many and varied. Those needs must be met by using some of the benefits of the Celtic tiger to assist the more vulnerable in our society, such as those who are living residing in St. Ita's Hospital, many on a permanent basis.
