Richard Boyd Barrett (Dún Laoghaire, People Before Profit Alliance)
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I start with a reminder that the crimes committed by the State and church against mothers and children were crimes from which we, as a society, must learn. This is not just the case in Ireland but globally. Given the long struggle here involving the victims of the various church and State institutions that persecuted, in particular, women and children and, more specifically, working class women and children, as well as minorities, Travellers, children of mixed race and so on, it is important to see the relevance of this experience to current events in the world.

In discussing the crimes the church and the State committed against women and children in the aftermath of the Irish revolution, it would be wrong not to mention the crimes being committed against women in Iran by the authorities there. A systematic regime of denying women self-determination and rights to their bodily autonomy and freedom resulted in the murder of Mahsa Amini, a young Kurdish woman, some 40 days ago because she refused to abide by the dress code of the moral police. That is just like how we had our moral police in this country. We thought it was okay to incarcerate women because they did not abide by certain religious rules and to stigmatise them and their children. We still see this happening today worldwide. This is not a situation exclusive to Iran by any means. It is happening in Iran, though, and we are seeing a heroic struggle being undertaken by people across that country, men and women, from different ethnic backgrounds, who are coming out in protest against the brutal treatment of women who just deserve the right to be themselves and to determine who they are. It is important to say this now because there is such a strong parallel between the history of Iran and that of Ireland.

Iran, quite rightly, demands to assert its right to self-determination against the manipulation of Western powers. For many years, those powers tried to control that state and region and install puppet regimes. It was very similar to the way Ireland was subject to the British Empire. Iran had a revolution in 1979, just like we had a revolution. It overthrew the Shah and declared self-determination. This self-determination, however, is now being denied to women in Iran. This strongly parallels what happened after the Irish revolution. It was a revolution of great promise to liberate the Irish people from an empire but that then incarcerated women and children for decades. They were treated as slaves and second-class citizens.

It is outrageous that the Iranian regime is doing this. As much as I absolutely assert the right of people in the Middle East, in Iran and elsewhere, to stand up against Western manipulation in the region and the hypocrisy and double standards of some of those who wish to condemn them for various things, nonetheless what the Iranian state is doing is shameful. It should desist and it should allow women and everybody in Iran the self-determination that people are demanding and taking to the streets for. I feel it is important to say this and to point to these parallels. I say this in the hope that the Iranian authorities may be listening and may come to understand that if self-determination is not self-determination in every respect, then what we end up with is what we have seen happen in this State. This happened even after we were supposedly liberated from empires.

I also draw Deputies' attention to the fact that I received a message from the Adoption Rights Alliance. This point may have been referred to already in the debate, but I was not here earlier because I had to visit someone in hospital. The Government promised to get people's personal information to them within 30 days. the Adoption Rights Alliance is hearing reports, from the Adoption Authority of Ireland, at least, but I am not sure what the situation is with Tusla, that this is not going to happen. The Adoption Rights Alliance is hearing that this will not happen. It may instead be more like a 90-day period, and into January.

It would be interesting for the Minister to comment if he is aware of this. Certainly, the message I have received is of grave disappointment people are feeling after the long wait to get to this point to the effect that there are now apparently significant delays in their getting the information - their personal information, histories, etc. - that they have requested. I ask the Minister to respond and to do whatever is necessary to remedy that situation so that the promise that people would get that information is delivered upon.

On the substance of the Bill, no doubt these are points that others have made. I echo, I suspect, what others have said.

The Minister will be well aware of the critiques that are coming from survivors' organisations, the ICCL, the Association of Mixed Race Irish and generally from survivors of the mother and baby home institutions. There are quite a few problems with this. Although we are glad to be here at some level, the fact that we are here is because of the relentless, brave, heroic campaigning of survivors who were let down so badly by the church and State. Ignored for so long, fighting on with determination, bravery and heroism, they finally forced the State to acknowledge the wrong that has been done to so many people by the church and State and insisted that they get acknowledgement, apology and genuine redress.

In that context, it is disappointing that the Minister has not responded to the points that were made about the completely arbitrary and unjustified basis for the 180 days' cut-off point for being in institutions. I studied psychology, among other things, when I was in college. One of the first things one does when one studies psychology is that one learns about children. One learns about child psychology. To be honest, while there are many schools of thought in psychology and psychoanalysis, there is absolutely no dispute among people who study the development of human psychology that the earliest minutes, hours and days of a child's life shape that child. The trauma of being separated, in effect, by force, by the perverted morality that dominated the State and the thought children should be separated from mothers if those mothers did not abide by certain religious ideas and a certain twisted notion of religious morality, had an effect on those children and those mothers from the second it happened. It will shape the psychology of children and mothers. For many, the damage and the trauma that is done in those first hours, days and weeks will never leave them. The idea that one can have an arbitrary cut-off where, for 179 days, there is - what was the ludicrous phrase Deputy Catherine Connolly referred to - a tabula rasais nonsense. That there would be a clean slate up until 180 days where one is not affected but that on day 181, one is a legitimate case that deserves redress is utterly preposterous. It subverts the integrity of the apology of the State. It subverts and undoes the integrity of the acknowledgement the State has supposedly done to suggest that it can be valued in that way. It is nonsense that, for if a person was in an institution for 179 days, no harm was really done but that on day 180 the harm was done. After that, we are on an escalating scale. Even at this stage, the Minister should change that and respond to what is self-evidently the case. The amount of time someone may have spent in an institution is not the key factor. It is the crime that was done to all in those situations and how that impacted on people and gave rise to the trauma they suffered as a result of forced separation, incarceration, stigmatisation and all that goes with it. I am well aware, as somebody who is an adoptee, that there are good outcomes and there are bad outcomes. Everybody is affected, but some are affected in different and more damaging ways. That is not something that one can correlate in some sort of mechanical way according to the number of days one spent in an institution and, quite frankly, it is insulting to suggest that one can.

It is also, as has been said, a matter of sadness that the Minister has not acknowledged the pain and anger that survivors - mothers and children who went through the mother and baby home regime - feel at the mother and baby home report which informs this and the failure to fully give weight to and acknowledge the testimonies of the survivors themselves. As the ICCL points out, the Minister promised a review. That review has not happened. From day one, I described that report here in the Dáil as a whitewash. I still believe that to be the case. It was a whitewash because to downgrade the direct testimony of the survivors in the way that it did, and to have an insulting summary, as was the case, which uses phrases such as "no evidence", "They were not 'incarcerated' in the strict meaning of the word ...", that certain evidence was "the product of a creative writing class.", etc., is completely outrageous. It is insulting and compounded the pain and the trauma that people felt. That review should have happened. That review and the rejection of that sort of summarisation of the experience of all those who went through the mother and baby home scheme should have been the precondition for establishing the redress Bill.

Another issue I am sure has been pointed out to the Minister already is that there is no specific compensation for illegal adoptions, forced labour, unlawful vaccine trials, abuse as adopted child or death, or specific provision for discrimination where systematic racism was at work. As the Minister will be aware, this issue was highlighted by many, including the UN special rapporteurs. The fact that the Bill provides payment in terms of work-related payment rather than acknowledging that it was forced labour - in effect, slavery - of the women who were incarcerated, is unacceptable.

I note that the issue of absences from the institution are not provided for where there were, almost certainly, definitely good reasons, as the ICCL pointed out, in some cases for people escaping from these institutions. However, the period for which they might have escaped is not accounted for in the context of their residency in the institution.

The general scheme of the Bill referred to the fact that there would be an enhanced medical card. That has been replaced by health services without charge but only for people who were resident for 180 days. The choice of 180 days is completely arbitrary. For those survivors outside of Ireland, the medical compensation is only €3,000.

This is a completely arbitrary and totally inadequate figure. They do not get a commitment for all of the health services they need to be provided, not without charge. The Bill also does not provide specifically for trauma-informed counselling and therapies, as survivors have called for. The provisions of the Bill rule out the possibility of people availing of the scheme if they have already taken legal action and got a court settlement in respect of the period in the institution the Bill covers. There was a downgrading of the requirement for the chief deciding officer with regard to advertising the fact of the redress scheme. In particular, the Bill does not expressly require advertising abroad. The general scheme of the Bill did provide for this.

I am sure the Minister has probably read a lot of these so I do not need to rehearse them all. Certainly, judging from the communications I receive, many people feel a lot needs to change and be amended in the Bill to address the concerns. The worst thing of all is the arbitrary 180 days. It is an insult. It needs to be changed. The dismissal by the mother and baby institutions report in its summary of the testimonies of survivors is a pretty deep insult. People now feel the inadequacies in the Bill show a failure, despite apologies, to take on board the trauma, suffering and hurt people experienced at the hands of this brutal regime that did so much wrong to so many women and children.

Denis Naughten (Roscommon-Galway, Independent)
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I welcome the opportunity to speak on this important legislation. I want to reference correspondence I have received from constituents regarding correspondence from the Irish Council for Civil Liberties on the legislation. It has raised the following three particular points. The scheme should be expanded to all survivors and the six month threshold needs to be looked at; the legal waiver, criticised by the UN which has specifically asked for its removal, should be removed; and the compensation available should be increased.

I want to focus on the third of these, that the compensation should be increased, with regard to provisions that are missing from the Bill. These are with regard to the vaccine trials and the failure to be accountable of GlaxoSmithKline, GSK, the corporate successor to Wellcome which carried out many of these vaccine trials in mother and baby homes throughout the country. GSK, the successor to those responsible for carrying out the vaccine trials on toddlers in our mother and baby homes, must stand up and be held accountable. At this stage we will not get answers but we must have acknowledgement from GSK that what was done was completely unethical and, as a result, at the very least it should and must contribute to this redress scheme.

At least 13 vaccine trials were carried out on more than 43,000 children according to the commission of investigation. More than 1,000 of these children were in the institutions concerned. Survivors who were literally used as human guinea pigs in vaccine trials in the mother and baby homes must receive an apology from GSK and must have this acknowledged by the company. It should make an offer of compensation for practices that would not have been tolerated in the United Kingdom where the company was based at the time.

When the mother and baby homes commission of investigation reviewed the medical records available to it - and I repeat, the records that were available to it - it concluded there was no evidence of injury to the children involved in the vaccine trials. This conclusion was simplistic. These children were treated as little more than human pincushions by the companies and clinicians involved due to the large number of injections they received and blood samples taken. How can any of us be sure there was no delayed immunological impact from these formulations? This is particularly the case if no guardian was able to tell a subsequent doctor treating the children that they had previously received an experimental vaccine formulation. The children as adults would not be able to inform their treating doctors they were involved in an experimental trial. Each of these children should have been contacted and provided with their medical records. They should be contacted now. These records, combined with their subsequent medical history, should be independently reviewed and a full and transparent report published on the conclusion of these assessments. Only then can we honestly claim there is no evidence of injury to the children involved in these vaccine trials. At a very minimum this must now happen. This must be provided for in the legislation. The full cost must be borne by GSK.

The mother and baby homes commission of investigation report flagged the issue of consent and the failure to secure it. Why is the issue of consent so important? It is primarily because each and every one of us has a basic human right to our own bodily integrity. There is a need for informed consent in advance of any medical procedure or medical trial. While the particular processes and procedures were far looser in terms of the definition of medical consent in the era of these trials, the basic fact is consent was not sought despite it being a legal and regulatory requirement at the time.

Without engaging with the parents or guardians of the children, a clinician could not have deemed them to be suitable for inclusion in any trial. For example, paragraph 34.121 of the commission's report on the 1968 to 1969 measles vaccine trial states the trial should have excluded children with a personal history of convulsions or allergy, asthma or eczema or strong family history of same. Without consent, how could any of the clinicians have ascertained this in respect of those children in the mother and baby homes? Even at that time, consent was a standard procedure for vaccinations outside of clinical trials, at least in some of the mother and baby homes. For example, paragraph 34.71 states the Dunboyne institute records contain completed written consent forms relating to instances where infants resident there were presented for immunisation at the public health clinic. These consent forms were signed by either the mother or the matron. There were no consent forms available for the clinical trials.

It is also clear from the commission's report that the Department of Health itself had serious problems with the use of children in these homes for clinical trials. There were concerns raised in the UK.

However, paragraph 34.92 of the report states:

A Department of Health document dated 30 September 1963 dealing with this application noted that, in April 1962, Professor Meenan had asked to field-trial an Oral Polio Vaccine in Pelletstown. In that instance, it was noted that the Department of Health had no objection to the trial itself but raised concerns regarding the selection of Pelletstown: 'While the procedure proposed appeared to be a safe one, the selection of ... [a] group to participate was open to objection and approval was not given on that occasion.'

The Department did not want clinical trials carried out on children in homes. However, whether the Department gave consent or not did not seem to make any difference to the clinicians involved. Indeed, paragraph 34.163 notes that permission was sought for a field trial using an oral polio vaccine on the children in Pelletstown, which was refused. The report goes on to state that the commission took the view that there was a high probability that Pelletstown was in fact used in the trial despite the refusal of the Department of Health.

GlaxoSmithKline has many questions to answer. Why did the scientific publications on the UK and Nigerian trials specifically refer to consent, yet these references were conveniently left out of the same publications on the trials based on Irish children? Why was Ireland seen as a soft option for trials involving children in institutions? Clearly, such trials could not take place in the UK, and that was also the case in Ireland, based on the regulatory and legal systems in place at that time. However, because of the lack of enforcement in Ireland, GSK was happy to proceed despite knowing there was no consent, as reflected in peer-reviewed academic journals that had to have secured authorisation from GSK's predecessors before publication.

It is also important to highlight that these scientific publications were peer reviewed in advance of publication. In the British Medical Journaland The Lancet, the academic publications of the British trials included an outline of the consent and confirmation that consent was obtained in line with law and ethical standards. However, this was not the case, as I have said, in the publication of the Irish trials. Why was this not set as a precondition of publication, when it should have been? If it had been, and if the academics were told that they must provide consent, maybe these children would not have been exploited and those institutions would not have been used again and again for trials. This culture of cover up went from the academic journals right up to the highest echelons in the State. The attitude was one of brushing the problem under the carpet and it would go away.

Paragraph 34.153 in the commission's report states that it had been flagged to the Department of Health in 1968 that Professor Meenan had conducted vaccine trials without the authorisation of the then Minister, yet nothing was done. When it comes to mother and baby homes, it was not just the State but reputable drug companies, academics and even academic journals such as the British Medical Journaland The Lancetthat were all prepared to turn a blind eye to the basic human rights of these children, purely because they were in institutions in Ireland that were not properly regulated and monitored by the State. There was a blatant policy of just ignoring consent where it could not be obtained.

Paragraph 34.122 of the commission's report states, "On 5 September 1968, Dr Coffey told Dr Burland [from Glaxo Laboratories] that she had come up against ‘the usual complications’ while trying to arrange to field-trial Glaxo’s measles vaccine in Dublin." The response from Glaxo was extremely interesting. According to the report, "Dr Burland advised Dr Coffey to liaise with Dr Hillery as 'she may be able to suggest a way in which you could overcome the problems you have encountered'." In other words, you could get around the law of the land and the refusal of the Department of Health to sanction this trial. There was a clear culture within the company, which has morphed into GSK, to circumvent the consent process.

Let us not forget that there was a clear benefit not just to GSK but also to the clinicians who participated in those trials. The commission's report refers to direct financial payments. At the very least, funding was provided to research facilities that would assist the researchers in securing scientific publications. This practice, along with the scientific publication of the trials, was facilitated by ignoring basic ethical consent in vaccine trials. All these scientific publications, those directly involved in the trials and those where funding was provided indirectly and directly by the predecessors of GSK, ensured the academics had scientific publications to their name, which secured them promotions and financial benefits as a result, as well as increasing their status within the scientific community. This was also of benefit to the universities involved, namely University College Dublin and Trinity College Dublin. They benefited indirectly by using these vulnerable children as guinea pigs without consent.

GlaxoSmithKline must clarify why these experimental vaccine formulations were not placed on the market on a commercial basis. Was it because they were not effective at preventing the diseases they were supposed to prevent? If that was the case, it would have impacted on the subsequent immunity of the children involved in these studies. Were the children outside of homes, either in Ireland or the UK, subjected to the same battery of needles that the children in the homes were subjected to? There was multiple administrations of vaccine doses and multiple blood sampling procedures. I doubt very much that any child outside of these institutions, either in Ireland or the United Kingdom, was forced into being used as a human pincushion on a regular basis to the benefit of the clinicians, institutions and GSK. That company benefited financially from this research. It was happy to conduct those trials, from which they benefited, without consent. Now, it must live up to its responsibilities to these children and their families.

Roderic O'Gorman (Dublin West, Green Party)
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I thank all the Deputies for their contributions. In the time available to me, I will try to address some of their queries, many of which I know we will discuss on Committee and Report Stages.

I would like to take the opportunity to set this Bill in the context of the Government's action plan and all that Government is doing in response to the needs of former residents and the legacy of these institutions.

Unfortunately, Deputy Connolly is not present. She spoke with huge knowledge, as she always does, as well as justifiable and real anger, about the history of the institutions at the time and the response of the State to these institutions. In terms of the issues she highlighted, I need to speak to how the State is seeking to respond to the issues she and many others raised. That response is being undertaken in the context of the action plan.

Deputy Connolly spoke about Tuam and the attempt to silence the work done by Catherine Corless. I know from my visit to Tuam and engagement with Tuam relatives that the core ask has always been to excavate the site and allow them to rebury their relatives with dignity. That is what the State is seeking to achieve in terms of the Bill and the work that has already been done to begin to establish the agency in Tuam. Work will begin on the site in the New Year.

Deputy Connolly said I or the Government had totally ignored the issue of illegal birth registrations. I would like to put on the record that when I came into office, I had before me an audit of what had, at that point, been potential illegal birth registrations. I published the audit. One of the conclusions of the audit was that further research would not deliver significant additional information. I was not happy with that as a conclusion. That is why I asked the special rapporteur on child protection to undertake a further piece of work on the issue of illegal birth registrations. He did so and gave me the report. A significant number of his recommendations are contained in the Birth and Information and Tracing Act in terms of how we provide practical supports for people who find that their births were illegally registered.

We included a provision in the Birth Information and Tracing Act that will allow Tusla to do further specialised tracing where there are files. We know there are files with suspicious markers, and Tusla now has statutory permission to undertake further work to discover whether more illegal birth registrations have taken place. It was important that the birth information and tracing legislation responded to the immediate needs of the 153 people identified as having been subject to illegal birth registrations in St. Patrick's Guild. It also allows for a process to examine the issue of illegal birth information further.

A number of Deputies, including Deputy Boyd Barrett, discussed the issue of access to information. I want to take us back to the first piece of legislation I dealt with in this area, the database legislation. At the time, I was accused of sealing records. I want to talk about what we did. We preserved a database that the commission of investigation developed. It believed it had to redact that to a point where it would be destroyed. I did not want it to be destroyed, so I brought forward legislation to protect it. The database will be used in this Bill to assist survivors. Rather than survivors having to find some information to show they were in an institution for a certain period of time, the database will prove that people were in an institution for a certain period of time. It removes any burden of proof on survivors.

The database is also being used by Tusla and the Adoption Authority of Ireland, AAI. Under the Birth Information and Tracing Act we introduced recently, 4,600 people have already sought their information. In terms of the time it will take for the information to be released, I will come back to Deputy Boyd Barrett. We provided for a 30-day initial period. If a file is complex, the case can take up to 90 days. A significant number of applications have come in initially, which is a good thing.

The database the House voted to preserve in the initial debate in October and November 2020 has already been used by my Department to give more than 700 people immediate access to their files and the commission of investigation report. During the debate on that legislation, many people spoke about their frustration, on behalf of people who gave testimony before the commission, that they could not get the information. Seven hundred people have already received information because of a vote in the House.

That comes back to one of the central issues that has dominated this debate, which is whether it is mother and baby institutions or other institutions and the wider issue of adoption, namely, the lack of access to information. That is why earlier this year the House voted finally to enshrine a statutory right of access to information to birth certificates, early life and medical information and any items a parent left for people under the Birth Information and Tracing Act. After 20 years of successive governments trying to legislate on this issue, we have finally achieved a statutory right to information. That was a key element of the Government's response in terms of the action plan.

We have to understand and properly reflect the history of what happened in these institutions. That was something I was very conscious of and something that was raised with me early in my tenure. That is why, under the action plan, we are bringing forward the national records and memorial centre. The site in Sean McDermott Street was under a cloud of controversy for years and was threatened with being turned into a boutique hotel. It has been transferred from Dublin City Council to the Office of Public Works so that we can begin the process of developing a national records and memorial centre where researchers and individual survivors and their families will have access to records and there will be an appropriate historical depiction of what happened in all institutions, which can act as a site of conscience.

When I read about it in the action plan, the work on appropriate terminology did not mean so much to me. It was only when we debated the Birth Information and Tracing Act and had a discussion on whether a mother should be referred to as a mother or a birth mother that I understood the difference it made to so many women. I had always used the term "birth mother", but it was taken as deeply insulting to a certain number of mothers. On foot of that, we made those changes. That is why that research, carried out under the action plan, is so important.

The Bill is part of the State's response. As I have said, the concept of redress means different things to different survivors. Different survivors have different priorities. For some, payments are important. For others, access to health support is important. For some, what is crucial is the reburial of their family members and for others it is access to information. What the State and Government are trying to do is advance all of these issues rapidly. When the action plan was published 18 months ago and we look at what has been achieved, there has been significant progress. I recognise so much more needs to be undertaken.

In terms of some of the specific points, many Deputies raised the issue of engagement with religious orders. The commission made extremely significant findings in terms of the culpability of the State and religious orders. I have always believed, and have said publicly, that if the religious orders' apologies are to have any meaning, they have to be combined with some real and tangible actions. That is what I have said to the orders. I have met seven of the orders and heads of the Church of Ireland. Negotiations are ongoing. I do not have date for when they will end, but negotiations are ongoing and are being pursued. I have always been clear that the need for time and to provide former residents with redress should not be delayed according to the outcome of those negotiations. The negotiations will go on and we will provide redress under the scheme.

Deputy Naughten spoke with great passion and power about the issue of the culpability of pharmaceutical companies.

I met with GSK. I put to it the findings of the report in terms of vaccine trials. I asked it to consider its response, which falls far short. I know it provided information to people who believe they were subject to trials but that is not an adequate response given their significance - I know Deputy Naughten campaigned on this long before I was in this House - in the context of the lack of informed consent.

Ten minutes is not enough to deal with the many significant and important issues that Deputies have raised. I ask that the Cathaoirleach Gníomhach indulge me for 30 seconds because Deputy Funchion raised a very important point about certain solicitor firms writing to survivors to ask them to sign up and pay for legal advice. We are aware of that. There is no need for any survivors seeking to use this scheme to take legal advice because the scheme is not being done in an adversarial matter. The State can provide them with legal advice in two stages. We will make that point clear in our communications with survivors, especially in the bulletin we send out to the email list, that they should not feel pressured to sign up to a solicitor firm.

I look forward to dealing with many of the other issues on Committee Stage.