Kathleen Funchion: Advocates swapping 'information' for 'records' in bill

Thanks. I am going to speak to amendment 14 and then I might come back on 29. I actually think 29 is the one I was referring to earlier that we can withdraw now on the basis that the timeframe has been removed, the restrictive, oh sorry, I formally moved 14. 14 is very, it is literally exactly as it says. It is just to capture the wider range by the use of the words records rather than information. I suppose we all know and it was discussed at all stages at this stage but particularly maybe at second stage and at community stage that there is you know distrust and understandably so with people who have survived from these institutions and I suppose there is a feeling that the word records just encompasses everything rather than information and where it may be subject to being picked and chosen and I am going to come back on 29 to 58 if that is okay because I want to just check that I am writing what I am thinking about those. Thank you. So just in context of then amendment 14 so look again from deputy function I think again this was an issue that was raised during committee stage and we acknowledged that the assurance about the release of not just the information but the documents as well that was repeated in other parts of the legislation hadn't been continued on there and we recognise that that was an error in the drafting. So amendment 14 seeks to amend the definition of medical information to read medical records. So the intention of this amendment is similar to my own amendments 56, 57 and 63 in that it seeks to ensure the release of medical records to a relevant person as opposed to the information contained within a record. My own amendments 56, 57 and 63 seek to remedy and oversight in the originally published bill which provided for the medical information of a relevant person but not the record itself to be released directly to that person and I know this was an issue of concern at committee stage and I signalled that I would bring this amendment and the government amendment will ensure that is the record containing medical information that will be released to a relevant person. So I think I am addressing Deputy Function's amendment 14 in the context of those three amendments and I will speak to our other amendments a little later. Just in terms of the amendment from Deputy Carnes and look this was one we did debate extensively about whether relevant persons people seeking this legislation should be given all information irrespective of whether they apply for it or whether they have a choice in terms of making an application. And as we have made very clear someone will be able to tick a box and apply for all information but we have also made clear that people can select which types of information they wish to receive. And I think it is a good thing that we give people agency over their determination about what information they receive. There may be and I do not know what those reasons are but there may be a reason why someone does not wish to receive medical information. Maybe there is something in there, something about their history that they do not want to know. And I think if they wish to make that choice, that is a choice that they should make and the legislation should not constrain them or compel them to receive information that they may not wish. Absolutely, you are right, that was not an issue that came up in pre-ledge but we have to recognise that there is a very substantial number of survivors in this area and different survivors, as we all know from our engagements, have different views. So I think leaving the legislation as it is and giving people choice on that matter is the best way to proceed. Thank you. Okay, so the question and amendment number 14, is that being pressed? So the question is that the amendment be made is that agreed? Not agreed. Not agreed. So this is an amendment in the names of Deputy Function and Cairns. This is in relation to some of the discussions we had about, I suppose, what is people's data and the fact that the list is non-exhaustive will not prevent personal data from being withheld. These categories of information are open to a range of different interpretations and given the experience I suppose that people have had today in relation to trying to access information, there is a fear and a distrust that has been mentioned already that personal data might be held back. The process is also likely to be extremely confusing for applicants instead of requiring data controllers to provide data subjects with a full schedule of records held. Several sections of the bill state that the relevant body may provide the relevant person with a statement setting out the information that is contained in the records that are held, but it is not equivalent to what must be provided to a data subject who makes a subject access request. We had a discussion about some of those subject access requests which have been quite successful, so a similar process would be welcome. Thanks, Minister. I do not for a minute question any Deputy's view about the spirit of what we are trying to achieve here. I think we all are trying to achieve, as Deputy Murnayne O'Connor just said, the full access, the full release of all information. But I do not believe that the change being proposed here, I do not believe that furthers that goal. I think it actually restricts that goal, because Deputy Funcheon spoke about the broadest definition of personal data. But we are providing a definition of personal data, and it is a lengthy one, and I will talk about its length in a moment, but we are providing a definition that will be in this legislation. And the only way this definition can be changed is if this legislation is amended. Whereas what the legislation currently does is the definition of personal data is defined as the EU defines it. So as Court of Justice cases evolve the definition of personal data, because we are referring to the use of personal data in the GDPR regulation, and that is interpreted by the European Court of Justice. And if they change that data, that definition through their case law, the definition of personal data that we use changes as well. But what this amendment seeks to do is, this is the definition of personal data. This is what we define personal data as for this legislation. And while it is lengthy, it is conclusive. And the only way of changing it is to bring forward amending legislation. So it means that the definition of personal data in this legislation may start to diverge from the most up-to-date interpretation of personal data as per decisions of the European Court of Justice. And I don't think that's a position we want to be in. We don't want to see Irish law start to diverge from European Court of Justice jurisprudence, particularly when it comes to a definition of personal data that is central to what the GDPR is all about. So that's why I am opposing this amendment. And I don't believe this particular change should be made. Now, as I said, it's a lengthy definition. It has 46 different sections. And the vast majority of these are already covered by the definitions contained in this legislation. So the definitions of birth, early life, care, medical information and provided items. That covers the vast majority of those 46 listed types of personal information that is proposed in this amendment. But it is important to say that that list of 46 also contains items of information that is not pertaining to the relevant person. And as Deputy Cairne said, this is all about ensuring that information pertaining to the relevant person is available to them. But some of those points are not pertaining to the relevant person, they're pertaining to others. And that's not something that we can include in the definition of personal data. So, as I say, we want our definition, the definition we use in this legislation, to be able to expand as the definition from the Court of Justice expands as well. And this would restrict that. And I don't think that's something any of us want to do. So I'll be opposing this amendment. I formally move the amendment. And these are the group of amendments that primarily deal with the information session. And look, that's just always going to be a really, really contentious issue for us. And I see some really positive changes that have been made since committee stage here today, but yet this one still remains. And for me, it's kind of the make or break section of it, because at the end of the day, what you're going to have is if somebody registers a no-contact preference and if somebody then goes to look for their information and they do not adhere to this meeting, they don't get their information. And I just I can't look past that. I just think it's so wrong because we can't say then that everybody has access or guaranteed access or a right of access if and it doesn't matter if it only affects one person or two people, because sometimes the argument is used that it's envisaged it would be a small amount of people. It doesn't actually matter the amount of people that are affected. It's the principle of it. People feel really exercised about it. People feel really strongly. During the second stage debate, there was even a number of government representatives that shared that view and that asked that this be looked at. I really feel as well that when we looked at this in committee, we did really work very well together and we came up with the alternative of the registered post. I know that that has since been dismissed by government, but I really feel that we looked at that and discussed it for so long. Actually, with the exception of the Minister, all of us that are in here are on the Children's Committee and I feel, not that I want to speak for anyone, but that we agreed it was a really good alternative. For me, I think why it's such a good alternative as well is it actually protects the state because there's a record there that letter X went to person Y and nobody can dispute that. I really feel we're going to be into he said, she said scenarios. If you have this type of a meeting, whether it's on Zoom, whether it's on Teams, whether it's a phone call, whether it's an in-person meeting, there's going to be people misinterpreting information and I think it protects everybody. I really strongly feel that the information session, and for me, there's been huge progress on the bill and I do actually want to acknowledge that because I would have been very critical at second stage and I do like to acknowledge progress where I see it and be welcoming of things that we can welcome, but I really feel for me this is going to be the one that will ultimately probably see us unable to support the legislation and I'm kind of sorry to say that, but it really, we feel that strongly about it and I suppose that's really the main argument. Thank you, Laskian Córla. Thank you very much, Laskian Córla. Fundamentally, what the information session is about is about the balancing of two sets of fundamental rights. The fundamental right to information, identity information of adopted people, that right that we all know has been denied, been denied for so long, and the fundamental right to privacy of a parent. The information session will apply in a very small number of circumstances because it will only apply where a parent has proactively gone and decided on the contact preference register to clearly register a no contact preference. We've discussed before, there's an existing national contact preference register, we've discussed before the very small number of parents who've done that. It's in double figures. But it is still by that small number of people, it is a clearly demonstrated expression of their wish to exercise a right to privacy, a right to anonymity. And Deputy Curran spoke with great elegance about the system of secrecy that was developed here. And you're right in all that you say, but it is not for me, it is not for any of us, if a parent wishes to register a no contact preference. I don't believe it's for us to question that. I don't believe it's for us to dispute their desire. So the question, so perhaps we do dispute that. I don't dispute that anyway. If they for whatever reason believe that they need some barrier to contact. If that's their view, I don't think it's for for the Oireachtas to dispute that. So the question then is, how do we balance their desire to exercise their fundamental right to privacy with that desire for information? And we have established in this legislation, a system, a process whereby in every situation, the adopted person will get their full right of access to information. In every situation following this process, full information will be provided. And you know, I think sometimes we forget what a sea change that is, the scale of the change that this legislation is bringing out. Compared to the situation now, where the assumption, the working assumption is restrict, don't release, keep the information hidden. And the reason for that was for constitutional reasons, because of the court case from the late 1990s. And I know there's disputes about its interpretation, but that court case decided by the Supreme Court has had that restrictive effect. And that court case shows that there are individuals who will go all the way to the Supreme Court because of their concern about their privacy rights. And I don't, you know, I don't question that judgment call, but it does demonstrate. And it is why so many of the attempts to legislate in this area have floundered because the worry about the constitutional balancing test here. And in engaging with the Attorney General, and particularly since the introduction of GDPR and that much stronger recognition within EU law of privacy rights, we've been able to find a mechanism which seeks to balance those two sets of rights. And it is a mechanism that we didn't invent ourselves. It was a mechanism that has been brought forward before, that has been proposed by academics, that has been proposed by advocacy groups in previous draft legislation. And I suppose that's why, you know, people can disagree with it, but when it is seen, it is described as insulting or degrading to people, I just make that point again, that this mechanism has been used, has been proposed for use as a balancing of that incredibly difficult set of rights, rights that are so fundamental to different, to different individuals. And we have changed how we set about this balancing, because it's been said nothing has been done here. We brought forward a significant amendment at committee stage, recognising that some of the language in terms of the explanation of privacy rights, that was the language used in the original draft, recognising that no, that's, that's, that's not okay. We shouldn't be, we shouldn't be talking about that. So now, the information session, used in that very small number of situations, is purely a factual process. The parent, the parents concerned, the, the relevant person, the adopted person, the person subject to an illegal birth registration, is told that their parent has exercised their entitlement under section 3811, to state that he or she is not willing to be contacted by the relevant person. And the making of that statement by the parent constitutes an exercise by him or her of their right to privacy. And at that point, after that has been conveyed, the full information is then released. And, and we believe from the point of view of ensuring that this legislation is constitutionally sound and is constitutionally protected. And I strongly believe that at some point this legislation will be challenged. I think there is a very, a very high likelihood that that will take place. And, and look, it's legitimate for someone to do that. But having waited 20 years for this legislation, having seen four, five, six attempts of drafts of legislation, and not get through this house because of an inability to resolve this. And I don't want a situation where a piece of legislation, where all of us in this house have worked very hard to try and get those definitions broad, to get those processes working well. I don't want to see that legislation at risk of constitutional challenge. And we went into the issue of the proposal in terms of a registered letter, and notwithstanding, you know, the worries about will the information, and even if someone signs to say they received it, whether that information, whether it's read, whether that actual point has been conveyed. It has been, the, the, the, the call was that the method set out here is the greatest restriction of the, the privacy rights of parents that, that, that, that we're prepared to, to, to, bring forward, that we believe will be constitutionally valid. And we have a duty, a, a, a duty to ensure that this legislation is valid, so that the huge amount of rights, and that right to full release of information that it provides, can be delivered to adopted people.