Alice-Mary Higgins (Independent) | Oireachtas source

Amendments Nos. 4 and 9 relate to the definition of "medical information". Amendment No. 9 deals with it in the interpretation section of the Bill. This relates to medical information more widely and the crucial issue of vaccine trials. We had extensive discussion of this on Committee Stage, including engagement from Senator Boyhan and others.Amendment No. 9 would amend the definition of medical information in the interpretation of the Act by specifying that "medical information" means all of the medical records and any information which relates to one's medical history. Again, medical information in this amendment is relating to a person's medical history but it is a little bit ambiguous. I am trying to look at strengthening it to make sure people are entitled to all their medical information and so that you do not get a piecemeal or selected piece of medical information coming through.

One place where this is important is addressed in amendments Nos. 10 to 13, inclusive, in specific cases of information as to whether a person was the subject of a vaccine trial. In the Bill there are references to whether one is vaccinated but it is quite a different thing to know whether one was vaccinated versus knowing whether one was part of a vaccine trial. That is different information. Vaccines are important and it is important to know what vaccines you have and what vulnerabilities you have but knowing you were part of a vaccine trial is an important part of knowing your story, what has happened to you and what you may have been subjected to. When we discussed this the Minister mentioned that he had concerns that other information cannot be shared which may be sensitive, including information on vaccine trials.

I was highlighting a particular point then and I want to highlight that again in these amendments, including in Nos. 11 and 13 in the way I have worded them. No. 11 is a material alternative to No. 10 and No. 13 is an alternative to No. 12. In the cases of both Nos. 11 and 13 I have added the phrasing of "relevant information in respect of any such trial". I am not saying that every single private record to do with a trial will be made available to every person who was subject to such a trial but it is relevant that you know, not just that you were vaccinated but that you were vaccinated as part of a trial. There could be key and relevant information. For example, if the institution in which you were resident formed a contract with a particular pharmaceutical company in its access to you and your peers for the purposes of a trial and if a particular medication was developed off the back of that, then that is relevant information. That information should be part of what is covered in letting people know their medical information. It is their human rights and personal story information.

The Minister will see that in good faith I have sought, in Nos. 11 and 12, to insert a phrase that makes this clear: "relevant information in respect of any such trial". If, in the case of No. 11, the Minister feels that including "relevant information in respect of any such trial" still proves to be an obstacle, then No. 10 simply states: "whether he or she was the subject of any vaccine trials". Amendment No. 10 will simply tell people if they were part of a trial and No. 11 will tell them, in more detail, the relevant information around that trial. Amendment No. 12 is on a medical or medicinal trial and it widens the scope from vaccine trials alone if other trials are issues. Amendment No. 13 is similar to No. 12. Amendment No. 4 states: "including records of those administered for the purposes of a medical or medicinal trial". In those amendments I am trying to widen the Bill so that we might capture things that might emerge that are not solely to do with vaccine trials but with other forms of trials that may have taken place. That seeks to provide the widest possible scope.

I hope the Minister can consider these amendments. I have listened carefully to the concerns he raised on Committee Stage and I have sought to alleviate them in these amendments. I again remind the Minister of the strong support that many in this House had for the desire to ensure there would be clarity and that persons would know if they had been part of a trial. I hope the Minister can find some of these amendments acceptable.