National Screening Advisory Committee Bill 2020: Second Stage

I welcome Members and the Minister for Health, Deputy Donnelly.

I move: "That the Bill be now read a Second Time."

I thank the Leas-Chathaoirleach. I should first explain my appearance. I was in hospital yesterday and I had a surgical procedure to remove some blemishes from my forehead, as a result of which I look as if I had measles. I want to assure colleagues that I am not infectious and that I do not have measles.

I realise also this has been a very busy day for the Minister. I greatly appreciate that he has taken the trouble on such a very busy day because of Covid-19 to be here with us. In the spirit of positive co-operation, I have had a very good meeting with civil servants on this Bill and I see Ms Flaherty is in attendance to advise the Minister. That is also very much appreciated.

This Bill will have the effect, if implemented, of saving the lives of 50 infants per year. I cannot imagine that any one of my colleagues will wish to vote against a proposal that would save 50 lives per year. As I may get the opportunity to say later on, this is the real pro-life movement. I have also said to Senator Mullen that I am hoping that he will speak on this Bill from a pro-life perspective. I note that the Minister has put down an amendment and I will not be calling a vote on this as I would consider it foolish. I am also very grateful to the Minister for putting this amendment down which asks that the Bill be read a Second Time this day 12 months to allow for further consideration, etc. Can the Minister reduce that period to six months? There was the suggestion that it is always 12 months. It is not. I am here for 33 years and I have seen periods of three months, six months and nine months. I am choosing the median and I asked the Minister that he might graciously consider the period of six months.

This Bill is urgent because now, in a table of 60 countries, including all of the European Union and the rich countries of the world, we are fourth from the bottom. That is not a good position to be in. I know that the Minister has indicated that we will be adding one new category this year but one category a year is fairly glacial progress. This Bill will have the effect of pushing things forward.

One of the other things I am particularly interested in is the question of a statutory footing. I would like to explain to the House why I am doing this. Putting the Bill on a statutory footing provides for greater accountability to the Minister and the Oireachtas. The Schedule at paragraph 10 requires the chairperson of the committee to appear before an Oireachtas committee when requested. Section 5 of the Bill requires the committee to prepare and lay before the Houses of the Oireachtas a report on the test and whether conditions should be added to it, which must be done within six months of the Bill being enacted. The committee will also be obliged to report annually on the programme and the addition of conditions to the list. By putting pressure on the committee to do so, further pressure is placed on the Minister, whereby he must make a statement to the Dáil as to why he is not taking on the recommendations of the committee. We would not be able to require the committee to do this report if it were not on a statutory footing. I understand that the argument from the Civil Service is that this is going to lead to a lot of bureaucracy, red tape, delays and the rest of it. I find that an astonishing argument to come from the Civil Service because I would have imagined it would claim to be efficiency plus. It is simply not true. I would like to emphasise this point to the Minister. Requiring the Minister to lay a report before the House every six months provides a degree of statutory urgency and a compulsion. The whole process will be speeded up.

The objective of the Bill is to provide for the extension of the national newborn blood spot screening programme. One of the arguments usually used against this kind of progressive measure is that it is going to cost the Exchequer money. In the long term, it is not. Providing for screening for conditions for which there is treatment will obviate ineffective, lengthy and expensive treatment for the children involved, so we are going to have a very considerable saving. I understand also that questions have been raised about Italy. In my original submission I said they had gone from screening for four conditions to 40 inside one year. Apparently this is spotty and not general throughout the whole of Italy. Some provinces are a little bit tardy. The Italian Government is at the moment processing legislation to make it general so that argument falls as well.

I was originally contacted by a remarkable man whom the Minister knows as well, Les Martin. He has three children, Cathal, Ciaran and Holly. The two boys have a condition called metachromatic leukodystrophy. Cathal was diagnosed after two and a half years. That meant it was too late for him. It is probably too late for Ciaran as well. Les Martin has suggested that the popular name for this Bill should be Cathal's Bill to reflect the important part he has played in this process. It is really remarkable and astonishing that a man like Les Martin - who has the most lovely family, a real picture-book family of attractive, lovely people and three wonderful children - in the agony of watching two of his children progress towards death, would have the generosity of spirit to go out and try to ensure that this does not happen to another family. That is a generosity that we in the Seanad could look to as an example. The cost is €50 per child, or €3.5 million, and it would save hundreds of millions in treatment. The HSE says it is possible to implement this immediately so let us do it.

I have also had a letter from a lady who wanted her name to be on the record, Samantha Kirwan. She has a child who is also caught with metachromatic leukodystrophy. It is a terminal and very progressive condition. Amelia has the juvenile onset form, with a life span of ten to 20 years or fewer.

She has lost her ability to walk and feed herself properly. Her speech has slowed and she is confined to a wheelchair. She went from a normal healthy baby to having everything taken away from her. It is important to mention these cases.

This has been in the political works for quite some time. On Wednesday, 19 June, my Sinn Féin colleagues in the Lower House tabled an amendment to a Fianna Fáil motion on maternity care. That amendment stated we must guarantee the right of every child born in Ireland to be screened for all diseases for which there is a viable treatment. This is also my position. I do not see any great point in screening for diseases for which there is no treatment but we should confine it and focus on this. The Dáil voted on that motion on Thursday, 20 June, and it passed so we have a track record there.

Without involving the President, Michael D. Higgins, in a political debate, I want to mention that he was contacted about this and he expressed his belief that it is a human rights matter. It is the right of a citizen to be treated in a way that is sympathetic to their proper development.

I was involved in the referendum on the eighth amendment and I was in favour of repeal. Abortion is a very difficult issue to address and the then Minister did so very honestly and openly, as did the then Leader of the House, Senator Buttimer. He was absolutely excellent in chairing the committee. We were able to open ten abortion clinics in one year. Why can we not do the same to save lives? This is a pro-life position. We opened ten abortion clinics. Can we not open genetic screening testing facilities? The saving of life is even more important than providing facilities for abortion. We spent so much time convincing ourselves that abortion should be allowed, why should we not do something for the babies who continue to live? I came up with what I thought was rather a good phrase about this business of postponing or referring. Long fingering is failing people. Long fingering is wasting time. What we need is action.

That HSE might argue we cannot screen for every disease if we do not have the facilities to care for those who have them. That logic is flawed. The patients will exist anyway. We will not get rid of them by just making a statement. They are going to be there and they are going to require treatment and that treatment will be expensive. They are going to come into existence and they will die. Screening is available for €50 a child so there is no excuse whatsoever to delay its introduction.

I greatly appreciate the positive attitude of the Minister and his advisers. I look forward to a situation where we can progress the Bill and save the lives of 50 infants. This is one of the most important debates in which I have taken part during my 33 years in the House because the opportunity to save life is so valuable. The Jewish people have a phrase that he who saves one life saves a universe. We have the opportunity to save 50 lives and I know the Minister in his heart believes this is an appropriate course for us to take. We will all be supporting him in this.

I welcome the Minister to the House and I thank my colleague and friend, Senator David Norris, for sticking with this and pursuing it. I remember a great debate about this in the Seanad with a previous Minister a year or two ago. Of course there were great promises that it would come back and there would be a focus on it. I thank the Senator Norris for sticking with it and using the Independent Senators' Private Members' slot today. I was happy to co-sign the proposal, as was my colleague, Senator Craughwell. It is an important Bill and I look forward to hearing what the Minister will tell us.

In 2018, the Scally report recommended the establishment of a national screening committee as an independent expert advisory committee with responsibility for considering population screening programmes in Ireland against international accepted criteria.

I wish to touch on two or three issues in respect of sections 2, 4 and 5 of the Bill and the Schedule so I will concentrate my comments on those elements of the Bill.

Section 2 deals with the establishment of the national screening advisory committee. Subsection (1) establishes the committee on a statutory footing, which is exceptionally important.

Section 4 is titled "Conferral of additional functions". This is a standard provision that allows the Minister for Health to draft an order, which must be laid before the Houses of the Oireachtas, conferring the NSAC with additional functions it may need to perform effectively. Senator Norris has referred to that. It is worthy of note and comment.

Section 5, "Reports of Advisory Committee", specifically subsection (1), requires that the national screening advisory committee report and make recommendations to the Minister for Health on the expansion and the conditions tested for and by the national newborn blood spot screening programme within six months of the Bill being enacted. The Minister must also cause copies of the report to be laid before each House of the Oireachtas. Again, Senator Norris referred to that in his introduction.

A number of things struck me about the Schedule, which deals with procedural issues relating to the advisory committee. The Schedule provides for a patient advocacy member of the committee. It is important that there would be a patient advocate member of the committee if it were established. The Schedule also requires that there be gender balance on the committee. That is an important point that sometimes gets lost in all these things. The Schedule also provides for details of the resignation or, for that matter, the removal from office of the committee. Perhaps issues may arise such that people should be removed from office, disqualified, etc., from the national screening advisory committee. That is an important provision in the Bill because it is something we do not always envisage when we set out to establish committees or when we run into difficulties. It is important we have that mechanism in place, and that is dealt with in the Schedule. The Schedule also requires members to disclose interests in any material matter to be considered by the committee and provides that the Minister may, if he or she deems fit, disqualify members of the committee for failing to disclose such interests. That is important. The Schedule also prohibits the unauthorised disclosure - this is a really important consideration - of confidential information obtained by a person in any capacity who engages with the committee and makes it a criminal offence to do so. The Schedule also obliges the chairperson of the committee to appear before Oireachtas committees whenever requested to do so.

This is a very reasonable, pragmatic, common-sense Bill and I would like to hear the Minister's thoughts on it. Again, I commend Senator Norris on pursuing it. Anything he does he sticks with it. He has stuck with this issue, and I look forward to a favourable response from the Minister to the Bill.

I move amendment No. 1:

To delete all words after “That” and substitute the following:

“the Bill be read a second time this day 12 months to allow for further consideration of the Bill and to allow the National Screening Advisory Committee to continue with its work and report on progress.”

I thank Senator Norris for bringing the Bill before the House and for all the very hard work he has done over a long number of years. As his colleague, Senator Boyhan, pointed out, this work started a long time ago and he has seen it through. It is great that his Bill is before the House today. It is very significant that he pointed out that 50 lives could be saved per year as a result of the measures contained in the Bill.

It is vitally important that the screening service is expanded. I have had two children in recent years and they were very fortunate to have availed of the screening service. Thankfully, there were no adverse findings in their screenings, but I know friends of mine and family members who have had issues picked up in the screening service. It is very important that the number of disorders is expanded, particularly when one considers that cystic fibrosis was only added to the screening service a short number of years ago.

That is incredible, given the high incidence of cystic fibrosis in Ireland. My amendment will allow time for the Minister to examine this measure.

I have had discussions with the Minister and he is very keen to see this expanded. The Senator made points on the report being laid before the Houses of the Oireachtas and a gender balance, and these are very important. I have heard the story of Les Martin and his family, which is absolutely heart-wrenching. We need this done properly for all the children of Ireland and it is very important for the Minister to work on this with the national screening advisory committee, NSAC, to speed up its work. It is not satisfactory that it has only met on a number of occasions since its formation.

At this point I ask the Senator to refrain from drawing parallels between termination care or reproductive rights for women and what is contained in this Bill. Terminations are essential healthcare for women and it is not helpful to ever draw parallels or pitch one group against the other, perhaps even demonising women, in making those comparisons.

I supported abortion rights.

The Senator's support was very much appreciated but drawing parallels between abortion care and what is contained in this Bill is not helpful. Perhaps the Senator could bear that in mind when discussing it in future.

I welcome the Minister to the Chamber and thank Senators Norris, Boyhan and Craughwell for highlighting this campaign again, as that is required to keep it to the fore and in our minds. It is an incredible piece of legislation that is required and I welcome it.

Coming from Wicklow, I met Les and his family on a number of occasions. The Senator has set out their position. As Les says, this is not for him, as his two sons have been diagnosed with a terminal disease. His campaign is not for him but for all the other families that will be affected by the issue and so they do not have to endure the pain and suffering that he and his extended family have experienced.

I acknowledge the work done by Les, as he brought this matter from nowhere to somewhere that it is very relevant. Without Les, the NSAC would not be in place. He has campaigned hard to have it put there. He has campaigned hard to have the screening expanded and has travelled to Italy, where one of his sons has been treated with some good results. Regrettably, all this could have been avoided if the testing had been expanded before. That is the fundamental point.

As Les has said, he is seeking screening for conditions where treatment is available. He is not looking for everything. He is looking for the prick test to be done on children where treatment is available. I know the Minister has met Les a number of times well before he took office.

I have been in the Houses of the Oireachtas for four years and sometimes I wonder why the Government does not look to the benefits of forward investment. This will save the State money in the long term. In this case we are talking about children's lives but across all sectors we are not investing enough in forward thinking that could end up saving the State money. I do not buy the argument that this is a cost on the State. There would be an eventual saving to the State if we could diagnose these illnesses early.

There is matter of putting this on a statutory footing and I have no qualms about that either way.

When I was a member of the Joint Committee on Housing, Planning and Local Government, it debated whether the right to housing should be enshrined in the Constitution. I honestly do not think it would make any difference. If the will and desire are there to deliver something, it will be achieved no matter whether it is in the Constitution or on a statutory footing. The Minister is committed to delivering on this issue and we will see results in that regard. It is to be hoped that within a year we will see the results the Minister is seeking. The national screening advisory committee needs to be given a bit more time. It has only just been established. It has gone through a Covid process whereby its last meeting was held using Microsoft Teams. Even in those circumstances, it has now supported an additional test that will be carried out on children.

I am fully supportive of this campaign and I am delighted that Senator Norris has brought the Bill forward. We need to keep this issue at the forefront of everybody's mind and we need to deliver on it. As Senators have stated, if we can deliver this, we can save a child every week of every year. At the end of the day, that is what is required. Nothing matters more than saving a child's life every week.

I welcome the Minister, Deputy Donnelly, to the House. It is only fair to say that he has the most difficult and challenging job in the Government at the moment. He is doing a very good job. As a recently appointed Minister, he is not just in the deep end, he is probably in the Forty Foot, but he is swimming very effectively. All we can do in this House is to lend him our support and try to support him in any way we can. The Bill that my long-time friend and good colleague, Senator Norris, has introduced is one that, ultimately, if it passes, as I hope it will, will save lives.

I wish to formally second amendment No. 1 because it is a reasonable amendment. The great thing about my friend and colleague, Senator Norris, is that he has a wonderful heart and he wants things done yesterday, not tomorrow.

However, when one is in government, sometimes one must try to prepare today to do things tomorrow. That is what the Minister wishes to do. He is in no way against the principle of what Senator Norris is trying to achieve or the ethos of the Bill. The Bill is framed on people's experiences. The best legislation that comes before the House is legislation that is framed on the life experience of citizens. I commend Senator Norris for that.

Today is 30 September. If Laura Brennan was still alive, she would be 28 years of age. Today is her birthday. Everyone in the House will be aware of the phenomenal contribution she made to society. For the last 18 months of her life, she campaigned for people to raise awareness. She shared her story to raise awareness of what the HPV vaccine can do and what can be achieved if people take it. When Laura embarked on her campaign in 2016 or early 2017, 50% of the age category for whom the vaccine is appropriate availed of it. Last year, 81% of young people of the appropriate age availed of the vaccine. I am glad to say that in County Clare, Laura's native county and also my county, that figure was 90%. On her birthday, I reiterate my comments on the Order of Business this morning.

It would be a fitting and most appropriate tribute to the tireless work of Laura and her memory if we could get that figure to 100% and if every parent realised that vaccines save lives and administering a vaccine to his or her child of 12 or 13 years could preventing cancer a few years later.

I listened to what my friend and colleague, Senator Clifford-Lee, said about her two beautiful children and the vaccines she has availed of. There is an old saying, which I am sure the Leas-Chathaoirleach has often heard, that prevention is better than cure. Investment in prevention is better than trying to find the money to create the cure. That is thinking long term. Unfortunately, thinking long term is not politically expedient and does not feed the monster of social media, but vaccination ensures that people's sons and daughters will benefit when they grow up. They may not even know they benefit through being vaccinated against the awful evil that could land on their doorstep.

Senator Norris's Bill aims to identify illnesses at an early age. When illnesses, challenges and disabilities can be identified at an early age, it is amazing what early intervention can do. In this country, four out of five people who go blind or lose their sight do so unnecessarily. It is because they do not have their eyes checked and the onset of conditions such as cataracts, glaucoma and retinitis pigmentosa are not identified. If people had their eyes checked regularly, they would get the interventions they needed. As a result, 80% of the people who go blind in this country every year would not go blind.

As a society, we need to have a conversation about health checks. The statistics show that females are more likely to get their health checked than males. Deputy John Paul Phelan, our great colleague and friend in this House for many years, gave an interview on RTÉ Radio 1 on Sunday last in which he spoke about his near-death experience and the obvious benefits of early intervention and regular medical checks.

Senator Norris, as always, must be commended. I have yet to see the Senator bring a Bill before this House that did not make sense. This one makes absolute sense. I have no doubt the Minister will agree with my sentiments. As always, however, we want to make sure the engine of the car is working. I urge the Senator to accept the Government amendment because it is planted in logic and the need for work to be done to ensure the common goal we all aspire to is achieved through his Bill. I know Senator Norris is man of common sense. I sat with him in the Seanad Chamber for 200 hours when we discussed the awful Bill on judicial appointments and he made a great deal of sense on that legislation.

We got rid of it.

On this occasion, as a wonderful parliamentarian, Senator Norris will see the logic of our amendment on behalf of the Minister.

The Minister might shave six months off the 12-month period.

The Senator will understand that we are better off getting this right rather than having to come back and retrofit the legislation, which none of us wants to do. It would be an astute move on the Senator's part to accept the Government amendment.

I begin by again welcoming the Minister to the Chamber. It has not gone unnoticed that this is the second time he has been in the House in a matter of weeks. We should all acknowledge and appreciate that given that this is an extremely difficult time and also the large amount of work in which he is involved.

I also thank Senators Norris, Boyhan and Craughwell for bringing forward this Bill. It is most welcome and Sinn Féin looks forward to supporting its passage through both Houses of the Oireachtas. I welcome the fact that the Bill will put the national screening advisory committee onto a statutory footing. I note that the committee has been set up and has already met on two occasions and I look forward to reading the full minutes of the second meeting. It appears from initial reports that recommendations are to be made to the HSE to add adenosine deaminase deficiency, ADA and severe combined immunodeficiency, SCID to screenings of newborns, which I welcome.

I particularly welcome section 3 of the Bill as it relates to the requirements of the committee to report on the expansion of conditions tested for by the national newborn blood spot screening programme, NNBSP and follow-up requirements thereafter. The expansion of the NNBSP, known to us mammies and daddies as the heel prick test, to include much more testing is long overdue. As we have heard from many previous debates, Ireland is way behind when it comes to the heel prick test and what we are actually testing for with it. We currently only screen for eight conditions but other European countries like Italy, which is the model of best practice, are screening for up to 40 conditions. It is to be hoped that the fact that the committee is required to report back on this specific issue on an annual basis will encourage progress in the expansion of this particular screening process.

It is a matter of great concern that many screening programmes in Ireland are failing and falling behind. Before the outbreak of Covid-19, we had the awful and tragic shambles of the cervical smear scandal. As everyone knows more than 200 women were directly affected by the failures highlighted in the Scally report. These failures led to the misreading of hundreds of cervical smear tests which led, unfortunately, to many women developing cervical cancer and some have since died. Acknowledgement is not enough, however. The Scally report was obviously a good start but it is not enough and its recommendations must be followed through. I ask that consideration be given to the repatriation of the screening samples in order that the work can be done here at home, with the HSE having control and oversight. The Government must step up its efforts in respect of the national screening laboratory immediately. We must have an attitude of zero tolerance for misdiagnosis of cancer across the board. The failure to provide properly functioning screening leads to more complex problems. I acknowledge that almost all previous speakers referred to the fact that in almost every situation, prevention is better than the cure. Early detection saves lives and it saves money in the long run.

We now have a very worrying situation with regard to cancer screening services. Services such as BreastCheck, CervicalCheck and BowelScreen have been suspended since 27 March. Some have resumed but others are still delayed. Fewer than 100,000 people have been screened in the first half of this year, compared to 500,000 in all of 2019. The immediate impact is that thousands of people are experiencing symptoms but have not been tested. As the Minister can appreciate, this is causing enormous anxiety. It has led to waiting lists bursting at the seams. Return to service is very much dependent on capacity and location. These screening services must resume fully in a safe and appropriate manner. I hope that this issue will be considered by the committee at its next meeting.

I reiterate Sinn Féin's support for this Bill and again thank Senators Norris, Boyhan and Craughwell for leading the way by proposing to put the committee on a statutory footing. The work on screening for genetic disorders in newborns did not go unnoticed by my party. My party colleagues, Deputy John Brady and former Senator Máire Devine were actively engaged with Mr. Les Martin and his family. Many Members have spoken today of their appreciation of the Martin family and their pursuit of the change we are discussing today, despite their own difficulties. We owe a debt of gratitude to Mr. Les Martin and his family for ensuring that this important work continues.

I look forward to working with the Minister and with other colleagues in the Chamber in the coming weeks and months on everything we have talked about today. I appreciate that there is an amendment to today's Order of Business and I am happy to reflect with Senator Norris on that. There are some pressing issues that, unfortunately, we cannot wait for a year to hear back on, including screening across the board. I look forward to the Minister's response.

I welcome the Minister to the House and I commend Senator Norris on proposing this important Bill, which I am delighted to speak in support of on behalf of the Labour Party. I commend and pay tribute to Senator Norris for his immense commitment to persisting on this issue. In the previous Oireachtas term, I spoke in support of the motion the Senator tabled on this same issue on 10 July 2019 in a different political, economic and health context. He has moved the debate forward by bringing that motion to the House last year and introducing this strong legislation.

I am delighted to support the Bill in both of its aims, including in its purpose of expanding the national newborn blood spot screening programme and in its provision placing the national screening advisory committee on a statutory footing. We addressed both of these issues in our motion last year. I was looking back at the note, which shows that motion was passed unanimously by the Seanad. I know the Government has put forward an amendment to the effect that the Bill would be read a second time 12 months from today. While it is a matter for Senator Norris as to what he does, it would be a shame if there was a division in the House-----

-----given that we passed the motion unanimously last year. There was such strong goodwill towards the motion and the then Minister for Health, Deputy Harris, spoke strongly in support of it, as Senator Norris will recall. I agree with the Senator that six months would be better and I share his impatience.

It is important that we move forward in a united fashion to ensure the important provisions in the Bill are implemented. In that regard and as others have done, I pay special tribute to Les Martin, his partner, Lynda, and their children, Holly, Cathal and Ciaran, who have been tireless in campaigning for the expansion of the newborn screening programme. Others have referred to their heartbreaking story of having two sons battling with a rare condition. I mention the immense and positive work they have done, not just in Ireland but also in Italy, to ensure that life-saving treatments will be made available for other children where early screening can be carried out.

Both in preparation for that motion last year and for the debate on this Bill, we have heard evidence of the huge value an expanded newborn screening programme could provide. We have heard about bill 167, which was passed in Italy in 2016 and which provided a statutory basis for the screening programme there. As colleagues mentioned, the Italian programme screens for 40 conditions, which is a much wider range of conditions than are screened for in Ireland. We know that only eight conditions are screened for in Ireland under what we all know as the heel prick test, as Senator McCallion said. There is a wide variation across different EU member states. Some 29 conditions are screened for in Poland but as few as two are screened for in Malta. I know there have been debates in the European Parliament and the Organization for Security and Co-operation in Europe, OSCE, about trying to ensure a more consistent approach.

We know the immense value of this early screening. As the explanatory memorandum points out, early newborn blood spot screening can ascertain whether children are suffering from certain disorders or conditions which are treatable if identified at an early stage. That is why we refer to this proposal as being genuinely life-saving. It is because early detection and prevention can lead to genuinely life-saving treatment. I recall watching the heel prick test being carried out as a new parent. It is quite traumatic, when a baby is only a few days old, to see the test being carried out but it is so important. It is a minimally invasive procedure, yet it has such a beneficial effect, even if we are only screening for eight conditions, as we are in Ireland.

It is especially beneficial when it is used to screen for many more disorders in, for example, Italy. Interestingly, the test is mandatory there. There is another debate to be had about mandatory versus voluntary screening tests. Ireland has a high uptake rate of the heel prick test. Every parent recognises how important it is. However, we have seen some alarming drops in uptake rates in child vaccination programmes. Other colleagues, in particular Senator Conway, referred to the wonderful Laura Brennan. I join the Senator in paying tribute to her considerable work throughout her life in support of vaccinations and encouraging more parents and children to have vaccinations. There has also been significant work done by Vicky Phelan and other campaigners in the context of the cervical smear controversy. Their work has sought to ensure high uptake rates of the cervical cancer vaccine as well as other childhood vaccines.

Who would have predicted a year ago when we debated this motion the immense focus on vaccines in the context of Covid? It is important for all of us as public representatives to speak in support of vaccination and the principle that vaccines save lives and are safe, and to urge parents to take up the vaccination programmes that are rolled out.

I strongly support this Bill. Labour Party Senators signed up to the motion last year and are signing up to the Bill this year. We commend Les Martin and his family on their considerable work. Front-line organisations have worked with Les Martin and Senator Norris, including the Jack and Jill Children's Foundation, the LauraLynn Children's Hospice Foundation, Enable Ireland and Rare Diseases Ireland. All of those organisations have been pushing for this Bill. They represent parents and families on the front line of caring for children with life-limiting conditions. They have seen the benefits on a human level of supporting legislation of the sort that was passed in Italy.

The other aspect of the Bill seeks to put the national screening advisory committee on a statutory footing. That has been an important development since the House last debated this issue. I welcome that the committee's inaugural meeting was held in December and that there has been a further meeting, but it is important that there be a statutory basis for the committee. I support Senator Norris's provisions setting out how the committee will operate.

I thank Senator Norris for his commitment to this issue, express the support of the Labour Party in the Seanad and in the Dáil for when, rather than if, the Bill gets to the Dáil, and urge the Minister to move forward in a timely fashion and ensure that the Bill becomes law. We owe it to Les Martin, his children and all the families that are facing the terrible diagnoses that affect so many children to remember, as Les Martin has told us, that legislation of this sort, which expands the programme, could save up to 50 children's lives per year. We have seen that life-saving effect in jurisdictions like Italy.

I commend Senator Norris and the Bill's other proposers and welcome the Minister to the House. Like others, I thank the Minister for affording proper time to this debate. That is important.

I will begin by agreeing with the message of prevention being better than cure. The question of vaccination is important. The HPV vaccine uptake rate has moved to 81%, but we need to aim for 100%.

It is an extraordinary act of generosity by Laura Brennan and others who have been affected by failures in our cervical cancer screening processes to have nonetheless lent their efforts and voices to championing other public health vaccination initiatives in the State. That act has saved lives and, I hope, will continue to do so.

I commend Senator Norris on this legislation. It has moved on since the debate on the motion. I highlighted some issues at the time. While I agreed with the motion, I had concerns. I raised concerns with similar proposals at an Organization for Security and Co-operation in Europe, OSCE, meeting.

It is appropriate that we look to whatever mechanisms we can to widen the number of conditions for which we screen. If we take the example of Italy, 40 conditions are screened for there. It is important for families to know about the existence of such conditions so that they can plan and access life-saving treatment for those affected, but it is also important for the Minister and other officials within the health service, so that they can put plans in place. I hope that as we move towards expanded screening, it will be accompanied by increased resources, particularly in the field of rare conditions. There may be only a small number of individuals who are affected by rare conditions, but their families and communities are also impacted, particularly when there are gaps in the health service in terms of the screening for those conditions.

I am in favour of the expansion of the screening programme but it should be noted that how we screen will be important going forward. It is something we must get right. There are concerns surrounding how we have screened for certain conditions in the past, both regarding procurement and some of the partnerships in which the State has engaged.

When this Bill comes back for Committee Stage, ethics is an area in respect of which I will move some amendments. It is an essential area of expertise within the screening committee. I refer to the example of cervical screening. In that situation the procurement contract awarded was of the lowest cost. I intend to bring Private Members' legislation later in the sitting term around the issue of procurement and the problem with focusing on lowest cost rather than looking at the price: quality ratio in terms of who is awarded the screening contract.

I agree with Senator McCallion that we need to seek to strengthen our own national screening capacity in Ireland. We have experts in our universities and must strengthen the mechanisms in place for screening and our in-house capacity for same. The other key principle is that the protection of public health must come first. This has to be about public health. I have had concerns about some of the partnerships into which the Government has entered with groups such as Genomics Medicine Ireland, now known as Genuity Science. We have had situations in which the Government has entered into partnerships with organisations and the HSE has experienced a delay in accessing the data. In such cases the information is effectively being gathered, used by a commercial partner and then eventually being made available to the HSE. It is vital that it is set out in legislation that it is within the statutory powers of the screening committee that it can ensure that the protection of public health is the guiding principle in this area. We must not find ourselves in a situation in respect of screening mechanisms where we are partnering inappropriately with organisations who may be providing access to databases to the pharmaceutical industry. We know, for example, that Genuity Science made €13 million in January 2020 from selling access to databases. These are not issues that are intrinsic to the heel prick screening test, for example. These are issues that can easily be avoided through careful legislation, safeguards and in-built ethical parameters.

As stated by others, I want to see the heel prick screening test being taken up widely, and for every child in Ireland to be screened. Ensuring the rights of the child are protected is part of the Constitution, and we must make sure that every child is given the best possible opportunity in life by being screened for conditions that will allow their families, and later themselves, to manage those conditions as best as possible going forward. The genetic data of children, such as their DNA and other elements that may be associated with a blood sample, are also intrinsic to their protection. Therefore, it is important that the purposes for which samples taken as part of the heel prick test are used, such as screening, are carefully safeguarded and firewalled. I say that because I want people to avail of screening opportunities, and for screening to be widespread.

I support the thrust of this Bill and the screening committee. However, safeguards must be built into the functioning of that independent committee, to ensure that we protect the public health purposes of the screening from other commercial activities.

I again commend those who have brought this Bill forward, though I would perhaps add a caveat. The Minister's amendment proposes a 12-month delay, which others have spoken about. I would hope that all the issues to which I have referred are ironed out in order that when we come back to it, the Bill is taken speedily. These issues should all be addressed in order that it can make speedy progress at that point. The Minister may have done this already and if so, I apologise, but it might also be useful if he guaranteed that Government time will be given to the renewal of this Bill in order that Senator Norris, for example, does not have to use one of his Private Members' business slots to have the Bill returned. I imagine that Government time would be provided given that the Government has sought the Bill's delay and retaking.

I am interrupting the speaking list but everyone will have an opportunity to speak later. It is crucial that nobody is excluded and no one be but at this juncture I am interrupting for the Minister's contribution and response. We have had the key speakers from each group and now the Minister will respond. I again welcome the Minister and congratulate him. I join in the general acknowledgment of his great work for us all.

I welcome the opportunity to address the House today on the National Screening Advisory Committee Bill 2020. I thank Senators Norris, Craughwell and Boyhan for their interest in this crucial topic which is so important to parents all over Ireland and I acknowledge the ongoing campaigning work and push from Senator Norris on this matter. I would not oppose this Bill in any event because of its merits but as a very long-standing fan of Senator Norris's work over many decades, it would be unthinkable for me to come in here for my first Private Members' Bill in the Seanad and oppose it. Thank goodness that it is a Bill on which we are very much aligned.

About two years ago, I was on East Coast FM. I got buzzed in and there is a couch on the left-hand side where one waits to go on and get grilled by Declan Meehan. I was sitting on the couch and a guy came in and sat down beside me. We got to talking. I told him why I was going on the radio and he told me why he was going on. He has three young kids; a little girl and two little boys. I also have three young kids and so we got to talking, as two dads in Wicklow, only two of Les's kids are very sick. That was the first time I met him and I have spoken to him many times since, including this week in the context of this Bill. He has done extraordinary work and continues to do so. I agree with colleagues that it is selfless work. Les is right, ultimately. I do not know whether the right answer is 40 conditions, but I know it is not eight. He is right and we are going to progress his work and provide the public health and scientific resources that are needed. We are going to save as many children as can be saved in this country. We are going to identify every treatable condition that can be identified and treated in this country.

That is what we are going to do. The only question before us is what is the best way to do that. Everyone in this House is trying to do exactly the same thing, which is to introduce the best possible regime for newborn screening in the country. I believe we can and must do more.

Speaking specifically to the Bill, the reason I asked for a timed amendment was that I believe the committee needs to be left to build up some pace and a head of steam. It is already working. I will talk later about the ninth condition I have now sanctioned for screening, as recommended by the committee. It is already doing what it was set up to do.

When I saw the Bill drafted by Senator Norris, I discussed it at length with officials. My conclusion was that were we to move the committee onto a statutory footing right now, there would be a real risk it would simply slow things down because, once things move to a statutory footing, there are all manner of procedures and things that have to be done. The reason for the timed amendment is only that - it is only that the committee is new. It is to let it do its work, let it build up a bit of pace, and we can then see where we are at. I will talk later to the various points on it. That is the only reason for the timed amendment. I believe there is a real risk that, in all of us trying to do the right thing, we could slow down what is vital and life-saving work.

I have tabled a response from Government to seek this 12-month extension. The national screening advisory committee is newly established. It has robust terms of reference and a diverse expert membership. It was established in 2019 on foot of the recommendations contained in Dr. Scally’s report. The committee's role is to provide robust independent expert advice when it comes to considering population screening programmes here. Substantial work was carried out to establish the committee and to staff it with independent and eminently qualified people and an eminently qualified chair, as well as a very broad membership, including what are called people advocates or patient advocates, with a very broad range of experience. In July 2019, Professor Niall O'Higgins was appointed chair and he brings a wealth of experience to the role. He was extensively involved in establishing a system of breast cancer services, BreastCheck, and the national breast cancer screening service.

The committee is set up in such a way as to enable it to be agile and in a position to respond to new developments and scientific research as they relate to population-based screening. The approach taken here is closely aligned to the approach in the UK, where the national screening committee is also on a non-statutory footing. Our committee has agreed terms of reference that closely mirror those set out in the Bill. Operating as it is currently established ensures the committee will be free to evaluate proposals for applications for any new screening programme or modification of existing programmes, as appropriate.

The committee communicates independent expert advice directly to me, as Minister for Health, and to the Department of Health, the HSE and relevant stakeholders and members of the public. It is strongly committed to increasing public understanding and confidence in the screening programmes as set out in its terms of reference. I would like to acknowledge the contributions of several Members regarding the broader screening programme. Obviously, we are focused on the newborn screening programme but the committee has a very important role, and we all have a very important role, in fostering confidence in those programmes.

In regard to the national newborn blood spot screening programme, I am very cognisant of the desire to expand this and agree wholeheartedly with the desire to expand it. I am acutely aware of how difficult it is for parents whose children have received a diagnosis of a rare disease, and how challenging daily life can be for them, their families and their children. It can be an overwhelming situation and can be very isolating for many families because of the significant work that is involved when a rare disease is diagnosed.

It is worth pointing out, on a positive note for Ireland, that we were one of the first countries in the world to introduce a national programme in 1966, so well done to everyone who was involved in that. The newborn screening programme known as the heel prick test is offered to all newborn babies in Ireland through their parent, parents, legal guardian or legal guardians when they are three to five days old. It checks for eight rare conditions that are treatable if detected early, which is key. Most babies born in Ireland will not have any of these eight rare conditions but, for a very small number who do, detecting a condition early has huge benefits. It means that treatment that is established as effective can start early, which improves health and prevents severe disability in later life or even death.

I acknowledge the many potential benefits of expanding the national newborn screening programme and I am committed to identifying opportunities for future additions to it. Any other population-based screening programmes will be considered by the national screening advisory committee. Recommendations will be made following an independent and robust assessment of the evidence against internationally accepted criteria.

Expansion of the national newborn bloodspot screening programme has been a priority of the committee since its establishment. The newly-established committee has been asked to prioritise a review of the programme. This is important. Specifically, the committee is concerned with how to progress this in line with international best practice. To be clear, the committee is not just reviewing new evidence as it emerges. It has been specifically tasked with looking at our current programme and making recommendations on how it can be expanded. Work on the review will be progressed with the support of our regulator, the Health Information and Quality Authority, HIQA, which has been appointed to support the work of the committee. HIQA is far more than a regulator. For example, it is currently tasked with assessment of the technology for rapid Covid-19 testing. It has a vital technical and scientific role to play in support of the committee. I have asked the committee to report within six months.

Since its establishment, the committee has made one recommendation to me in respect of the national newborn screening programme. The meeting took place in July 2020. It recommended the addition of adenosine deaminasedeficient severe combined immunodeficiency, ADA-SCID. I hope any scientists in the room will forgive me. I accepted the recommendation and have advised the HSE of this decision. The HSE is now making the relevant arrangements for inclusion in the programme.

This is of key importance. If we were debating this today with nothing having happened except that a committee had formed somewhere and terms of reference had been agreed, I would be more concerned. Perhaps then it would be right to introduce a forcing mechanism. If the Oireachtas was not convinced the committee was doing its job, a statutory footing would be needed. The fact that the committee is doing its job is relevant and important. We have just moved from eight rare conditions to nine. The question is how to move to ten, 11, 12, 13 and so on.

Changing the 12-month extension would require a Cabinet decision. The 12-month period was my proposed way of meeting Senator Norris's concerns halfway. The committee probably needs the 12 months. However, when I read the Senator's Bill I noted that it would require the committee to report to me and me to lay the report before both Houses within six months of the committee being established on a statutory footing. As a proxy for that, I have already written to the chair and asked the committee to report to me within six months. I will go one step further. I suggest that we should retain the 12-month extension, but when I have the committee's report after six months I will share it with colleagues here. Perhaps we can convene formally or informally to discuss the progress that has been made.

That would be very useful.

I thank the Senator.

I wish to make a point about public health, which is what this is all about. My strong suspicion and the view of public health professionals is that public health has been a poor relation of other healthcare in this country for a very long time. I was before the Special Committee on Covid-19 Response earlier today. Today we made two very significant announcements. The first is that I have just sanctioned a doubling of our public health workforce. Before the Covid-19 pandemic reached Ireland we had 254 people working in public health throughout the country. That includes the eight public health bodies, the Health Protection Surveillance Centre, HPSC, and other areas. We are adding a further 250 staff, which will include public health doctors, public health nurses, scientists and administrative and management support.

It is a very significant statement of intent that we are doubling our public health workforce.

Another measure which I have just sanctioned is that public health doctors will have access to consultant grade. The Cabinet passed permission for the relevant enabling legislation yesterday. Essentially, until now public health doctors or specialists have not been able to achieve consultant status. As such, they have had to work on a wage that is not shoddy by any stretch of the imagination, but is certainly not comparable with what their colleagues in other branches of medicine have achieved.

It is more than Senators get.

That is true. It is significant. The enabling legislation was sanctioned yesterday and we will create public health consultant contracts for the first time.

The other aspect is that I announced a few hours ago that we will double our public health workforce. The HSE will begin that recruitment in the coming two weeks.

I thank Senators for their comments on public health and the need for us to increase our screening and public health capacity. The announcements made today are relevant to that and will go a long way to helping that to be done in the coming months and years.

At this juncture, we return to the list of speakers. Senators McGreehan and O'Loughlin wish to share time. Is that agreed? Agreed.

After that contribution, I may as well throw away my speech and just thank the Minister. It is great to have a Minister come into the House who is so open to improving the lives of children and all citizens of our nation. All Senators agree that the screening of newborns is among the most important screening programmes. I know people who, because they were born in Newry, were screened for cystic fibrosis. They were born before 2011. Their quality of life was improved because they got the heel prick test. It was normal for that test to be carried out in the North, but it was not routinely carried out in the South until 2011. Children born before 2011 were not screened for cystic fibrosis, but those born since then have been screened. That has an impact on their life expectancy and their quality of life.

I welcome the Minister's commitment to the expansion of the screening programme. I welcome the fact that he will update the House in six months' time. I ask that he get his officials to look at the situation in Italy and the potential savings the HSE could make by implementing a testing model similar to that in operation there. As he knows, it is not just about finances or a cost-benefit analysis of resources being assigned to various issues; it is about the lives of babies. It is about their life expectancy and quality of life. It is about looking after families and babies. They deserve the best start we can give them. I very much welcome that he has prioritised the review for the national newborn blood spot screening programme and that he stated it will be expanded in line with international best practice. I ask him to update the House with regard to the basis or grounds for the board deciding to recommend a particular additional condition or screening test over another. There are now eight such tests. What is the cost-benefit analysis or reasoning behind those decisions?

I refer to the prioritisation of development checks for children. They are just as important as screening.

We have development checks at six months, 18 months and three years, and they involve hearing, clickety hips and such important aspects of development. All my children were lucky enough to undergo those checks at timely intervals, when things were checked and double-checked. Any problems would have been picked up-----

I hope the Senator will not mind my saying it, but she is straying into Senator O'Loughlin's time.

I apologise, I thought I had longer. I just want to ask the Minister-----

To be accurate about the time, the Senator has 30 seconds remaining, without straying. I am sorry.

That is fine, I just want to ask the Minister to prioritise childhood development checks. I appreciate his time, effort and candour here today.

I commend Senator Norris for the motion he has put forward with his colleagues. I listened to his compassionate plea earlier for the family he mentioned, and meeting a young Dad and his children. I also listened to the contribution from Senator Casey concerning his knowledge of the children, as well as what the Minister had to say. It is incredibly poignant to think that a family dealing with its own crisis as the health of the two young boys declines is also lobbying so hard to ensure that other children and families will not have to go through the same pain, heartbreak and grief. I commend that family, because it is not easy to endure that experience and start a campaign that takes away from the precious time they have with those they love.

I welcome the opportunity to say a few words about that situation. I thank the Minister for being here and for the positive response he has given to this motion. The Minister's proposal regarding public health doctors is good, including the doubling of their numbers and associated recompense. We have relied on them a great deal in the last seven or eight months, and we will be relying on them again for the next 18 months or so. Our public health doctors have been doing an incredible amount of work in the background as well.

Looking at the screening service now, we can see how far we have come since the first screening programme, BreastCheck, was brought in 20 years ago by the then Minister for Health, and now Taoiseach, Deputy Micheál Martin. I think that was in June 2000, the millennium year. We have moved on and now have three different types of cancer screening programmes, namely, BreastCheck, BowelScreen and CervicalCheck. I do not need to go through the litany of failures surrounding cervical cancer screening, but every one of those women impacted spoke about the importance of encouraging and supporting other women to go for screening. That has certainly been a very good thing. We also have diabetic retinal screening.

The establishment of the national screening service in 2007 was really important. The Minister spoke of the committee which commenced earlier this year. It is important that it is an independent body which will give advice to the Minister and his Department. I state that because this concerns promoting public confidence as much as anything else. The Minister said, "we can and must do more", and we absolutely must. If we can save 50 lives a year, then there is no option whatsoever but to do that.

I accept the explanation given regarding the amendment, and I support it, but I also accept the Minister's suggestion that after six months he might be able to return to the House and discuss the issue with the proposers.

It is a privilege to be in the House to speak in a debate such as this. We get bogged down in discussing everything that is happening throughout the country because of the Covid-19 crisis. It is helpful to have an opportunity to talk about other important issues that need to be addressed.

I welcome the Minister to the House and wish him well in his role. I also welcome his announcement and his comments regarding the amendment the Government is tabling. I commend Senators Craughwell, Norris and Boylan on their work on this extremely important Bill. They have the collective support of the House to see its provisions implemented over the next 12 months.

I am the father of three beautiful sons. Senators McCallion and Bacik spoke earlier about the heel prick test, which reminded me of being a very nervous first-time father taking my son to have it done. It is a fantastic memory and, thanks be to God, my son was healthy and well. Senator Norris summed up the issues when he said that this programme could save the lives of 50 children every year. That is why the Bill needs to be supported. I ask Members to support the Government amendment, as detailed by the Minister, with the guarantee that I personally, and the House collectively, will support the Senators in seeing their proposals implemented.

I will not call a vote.

The next speaker is Senator Craughwell, who has been waiting patiently for his turn.

I am somewhat inclined to throw my speech out the window, so to speak, in responding to the debate.

There is no chance of that.

I join others in commending Senator Norris. I am mindful of the parents throughout the country who are dealing with conditions or illnesses in their children that might have been picked up had the service provided for in the Bill been available some years ago. Most of us have come across somebody in our lives who is struggling with a child who has a terminal illness or who is suffering with cystic fibrosis or some other condition. To have one's child given a sentence of death early in life is tough going.

Senator Norris, speaking in the House in July 2019, said that this was the most important debate in which he had taken part in his 32 years - now 33 years - as a Member of the Seanad. That statement attests to both the seriousness of this issue and the relative ease with which it could be rectified. I acknowledge the role of Mr. Les Martin, his wife, Linda, his daughter, Holly, and his two sons, Cathal and Ciaran, in ensuring this Bill meets the needs of families in which children are born with undiagnosed genetic illnesses and whose lives could be saved by an expanded newborn screening programme. As a father and grandfather, it is unimaginable to me that my children or grandchildren might have been born with undetected but treatable conditions and that the length and quality of their lives would have been dependent on a programme that exists but has not been expanded, despite the significant leaps in medical and genetic research.

I sincerely hope the Bill will be passed and it looks like it will be. It will expand the national newborn blood spot screening programme, which has the potential to allow for life-saving treatment for at least one child per week. I listened to the Minister's argument regarding the delay of 12 months and I understand the rationale behind it . However, I am mindful of the fact that 50 children will not benefit in the interim. I acknowledge that he will make every effort to move on this sooner if he can.

It should be noted that new conditions can be screened from the same heel blood spot that is currently used. We learned from Mr. Martin that Italy has increased its testing to cover 40 conditions, an increase from four previously. I understand the Italian authorities are willing to share the technology and anything they have learned with their European colleagues. It is one of the great benefits of being a member of the European Union that we have this type of co-operation between member states. Legislation was enacted to make the screening a mandatory national public service to ensure the viability and longevity of the newborn screening service in Italy.

Every Italian newborn receives a free and compulsory test providing early diagnosis at birth for almost 40 rare metabolic hereditary diseases. My colleague, Senator Bacik, referred to that. That is another debate that we must have with respect to matters such as screening and vaccines that have been discussed today because the protection of life is important.

The Bill before us places the national screening advisory committee on a statutory footing. I agree with that provision, which was one of the many recommendations of the Scally report on our national screening programmes. The Bill also places the screening programme on a statutory footing. It will ensure dialogue with stakeholders, full disclosure and accountability in respect of all screening programmes in the State. This is essential as it will ensure that the committee is well resourced, forward looking and proactive, rather than reactive in response to new conditions.

The cost of the heel prick test in Ireland is approximately €50 per child. This is a pittance in the overall scale of the national health budget, yet life-saving for the children who receive diagnoses. Any additional costs arising from expanding the programme would be far exceeded by the benefits. I am sure there is no need to convince any Senator on any side of the House of this.

In looking back over the history of the national screening programme in Ireland, it is hard to believe that we were considered to be leading lights in newborn screening and research in the world when the screening programme was first set up in 1966. Now, sadly, we would be considered one of the laggards as we have not expanded the number of conditions, although I heard today that we are moving in that direction and I thank the Minister for that.

Earlier this year, Mr. Phillip Watt, chair of the rare disease task force, stated that while an average of 20 diseases are screened for at birth among babies in Europe, Irish hospitals only screen for eight conditions. The Minister is telling us that the number is now increasing. This contrasts sharply with some states in the USA where babies are screened for up to 50 conditions.

Currently, 42 children are born in Ireland each year with a condition that could be detected at birth and treated but is not. That is one baby every eight days. I understand the Minister's predecessors, the Minister, Deputy Harris, and the Minister of State, Mr. Finian McGrath, were very supportive of this legislative proposal and that the then Minister gave a commitment in the House in July 2019 to send his officials to Italy to meet their Italian counterparts . I am not sure if that meeting has taken place.

It has. It was not entirely successful.

We often use the expression, "time is of the essence", in this House but it was never more vital than in this case.

I am delighted and proud that Senator Norris asked me to be a signatory to this Bill. I am also delighted that everybody in the House seems to be supportive of it. Hopefully, the Minister will tell us in six months that we are ready to move and the interim report has answered any questions that need to be answered.

I hope parents and, in particular, young women who are pregnant and experiencing all the fears that go with bringing a child into the world, trust us to do everything and to move hell, heaven and earth to screen for 42 conditions as soon as possible. It is so important that this is done. It is a long time since I was a first-time dad but, more than anything else, I remember the fear of this tiny little being coming into my life and being asked to pick her up. I loved my daughter but she was so tiny and when picking her up I had a fear of breaking her in some way. I would have walked over hot coals to do anything to solve any issue that she may have had. Every parent in the country is the same.

There is a big weight on the Minister's shoulders, in addition to everything that is going on with Covid-19 and all the other issues in health. This is one area which would be a big win for him and every citizen in the State.

Cuirim fáilte roimh an Aire.

I support the Bill. I commend my colleague, the father of the House, Senator Norris, on persisting with this important cause. I commend Senators Boyhan and Craughwell for also sponsoring the Bill.

The Bill is welcome. It has two main effects: it puts the national screening advisory committee on a statutory footing; and, in the context of that committee's work, it requires the committee to make recommendations, not about the conditions tested, but about the expansion of the conditions tested by the national newborn blood spot screening programme. Several Senators have spoken about the importance of such recommendations and the expansion of screening.

Any initiative that allows increased screening of citizens for serious conditions should be supported in order to allow for early intervention, give clinicians a head start and allow those with diagnosed conditions to deal with them or to be helped in the best way possible. It is important that we increase screening for newborn children, particularly those who may be at higher risk because of a family history of certain illnesses.

It is good that the House is discussing screening. We all know that, in the context of Covid-19, our healthcare system has been under considerable pressure. Even getting treatment for conditions has been difficult. As a result of the need to focus on treatment, there has been an unfortunate halting of BreastCheck and CervicalCheck appointments during the pandemic. Sadly, that will probably cost lives in the years to come through certain conditions being diagnosed much later than would otherwise have been the case. We understand the reasons for the pressures on the healthcare system and for screening to take second place to the treatment of identified conditions, for example, cancer, but we must get back to having a well-focused and well-funded approach to screening. BreastCheck, BowelScreen and CervicalCheck have performed a vital service for women and saved many lives in recent years, notwithstanding the failings that have been highlighted.

I wish to mention a number of issues. Senator Norris is clear in the Bill on the need for openness and transparency in the provision of our health services. Putting the national screening advisory committee on a statutory footing is intended to follow through on the letter and spirit of the Scally report, which recommended and led to the committee's establishment. However, I am particularly taken by section 5(4) concerning the committee's recommendations. We need to be clear that it is not just in the context of the expansion of the national newborn blood spot screening programme that the committee is empowered to make recommendations. Rather, it has a broad remit under section 3 to make recommendations, and that is as it should be. However, section 5(4) provides: "If the Minister does not accept a recommendation of the Advisory Committee ... the Minister shall, within one month of being given a copy of the recommendations [containing the recommendations] ... prepare and lay ... a statement of the Minister’s reasons for not accepting it." I have not had an opportunity to look at how common this kind of requirement is, but at a time when there is concern in Ireland and, indeed, Britain about the important role of governments in making decisions and the need for parliaments to restore their level of oversight of important decision-making, this is another way where, with great respect to our Government and the important function of the Minister, accountability is sought and ensured by requiring that, where a recommendation is not to be accepted, a reason for not accepting it is given fairly promptly. I welcome that.

I wish to raise a number of issues that I touched on during the debate we had last July which the then Minister of State at the Department of Health, Finian McGrath, acknowledged as important. He said that the Department was seeking information from other EU member states on them. I refer first to the question of the efficacy of screening programmes. I understand that there is a debate abroad about the effectiveness and benefit of certain forms of screening and DNA testing in particular. In the United States, there is a view that new screening should only be targeted at children within families where there is a history of certain serious conditions. Non-specific testing obviously has a large cost and perhaps we should be directing resources to provide the maximum range of testing to those at highest risk. That said, I favour the broadest approach to screening but would ask whether this is a policy consideration that will underpin the work of the committee or whether the Minister thinks that it should. I am also interested in the question of conflicts of interest. I have previously raised the fact that screening and DNA testing are often a cash cow for the pharmaceutical industry. Eruofins Biomnis, the company that produces the Harmony test, for example, has made enormous profits. The Irish and British medical councils have also issued warnings about potential conflicts of interest in circumstances where doctors have a financial interest or incentive to recommend certain testing. These are also important issues that do not contradict in any way the spirt or the aims of this legislation. Ní thagann siad salach ar bhunspriocanna an Bhille seo but it is important that they are considered. It would also be important that the committee, once given statutory underpinning, would tread carefully and take such issues into consideration.

I wish to raise an issue that is not directly connected but about which I would like to ask the Minister, although I am not necessarily expecting a response today. I raise it in the context of prevention and the early identification of conditions, as well as taking early steps to ensure the future treatment of conditions. I am interested in the whole area of so-called chord blood banking, the process whereby blood is taken from umbilical chord or placenta after birth which contains stem cells that could be retained for later use. Sometimes this blood is retained in private clinics while in other cases it is publicly held. I understand that this is relatively common abroad but is not common in Ireland. Is this something upon which the Minister has a view? Is it something that is being looked at in the Department?

Finally, I wish to return to the committee and the qualifications required of its members. I note that 18 specialties are listed and correctly so, including genetics, laboratory services, nursing and midwifery. I also notice, however, that journalism is included. That jumped out at me because it is the only clearly non-medical specialty listed. It jarred slightly with me. I am not sure I have a settled view but I am wondering why it was felt that journalism should be specifically included. Is it to do with having somebody on the committee who could help to explain its work, make sure its reports are well written or help to explain its position in lay person's language? I have a limited former career in journalism, which is perhaps why I am intrigued by it. Of course, one might add that at the rate that journalists are becoming Government advisers, maybe that should also be included as a category for possible consideration. This is a question that jumps out at me because it would be a stretch to say that journalists have the same type of technical or academic qualification that the other specifically named specialties can provide to the committee. I wonder about that while not having a very strong feeling about it.

In summary, I commend Senator Norris on bringing forward this very important Bill and I am very happy to hear the Government's positive response to it. I look forward to its early enactment and to the strengthened work of the national screening advisory committee. The proof of the pudding, of course, will be when we see an enlarged number of conditions being tested for in the context of the national newborn blood spot screening programme.

I thank the Minister, in particular, and his advisers for being here with us this evening. I thank the Bills Office which was of great help in preparing both the explanatory memorandum and the legislation itself, which does in fact fulfil the spirit of the Scally report.

I will make a point to the Minister that I had intended to make but did not get around to. Can he please consider putting Les Martin on the committee? The Minister spoke about having patient representatives. This is the man who led the whole programme. He led the entire thing. Nobody knows more about it than he does.

I wish to refer, without being contentious, to Senator Clifford-Lee and her comments about my linking the situation to abortion. Let me explain. Abortion is a regrettable situation. I do not think anybody feels they are not a complete human being without having had an abortion but I have supported the right of women to have abortion from very early on. I believe I was the first Irish politician to put abortion on an election manifesto in 1977. I do feel strongly about the rights of women in this difficult situation. That is all I would like to say in explanation.

I thank my colleagues here from all sides of the House. It is quite unusual to have utter unanimity, which I very much welcome. Thank you very much.

I thank the father of the House.

Amendment agreed to.
Motion, as amended, agreed to.

The House stands adjourned until 10.30 a.m. tomorrow, Thursday, 1 October 2020, in the Seanad Chamber, in accordance with the order made today.

The Seanad adjourned at 7.12 p.m. until 10.30 a.m. on Thursday, 1 October 2020.