Rónán Mullen (Independent) | Oireachtas source

Cuirim fáilte roimh an Aire Stáit. Tréaslaím le mo chara, an Seanadóir Norris, as an rún seo a chur faoinár mbráid. I commend Senator Norris. He and I often disagree deeply on important and sensitive issues. This is an important area of human dignity on which we certainly agree. I have some questions but I would not like to be seen as being in the ranks of the sceptics on this. I hope to contribute to this debate later, when some of the issues, including those mentioned by the Minister and other contributors, can be discussed. It is not the first time that Senator Norris has brought something important and socially relevant before this House. Some of the best and most important moments in the Seanad occur when there is an intersection of people's lived experience, and on that matter I welcome the visitors in the Gallery and the efforts of politicians in the Houses. Any initiative which seeks to screen newborn children for serious conditions at an early age should be welcomed. Such testing would obviously have the benefit of allowing early interventions which may prevent or greatly diminish the impact of those conditions, and give parents and clinicians a head start in addressing them. There is a phrase, "Knowledge is power", though I would never want to use a phrase like that in this context because no medical person should ever have power over a child or parent. We can certainly say that knowledge is care and responsibility. Knowledge always has to be facilitated.

In raising certain issues, I do not want it to be taken that I am against the motion. I have questions and concerns which need to be teased out. I do not profess to be an expert in the area of DNA screening but I understand that there is a debate in other jurisdictions about the effectiveness and the benefits of testing. For example, we know from experience of a recent case here, which I will return to in a few minutes, that when it comes to DNA testing, false positives and false negatives can occur. A positive test for a condition does not mean that a child will necessarily develop that condition, merely that the genetic markers exist which give the child a predisposition towards it. It is legitimate to ask and for these questions to be answered whether this will lead to families, or even the taxpayer, being exposed to unnecessary stress or if we could find ourselves investing in costly treatment or medical attention which might not be needed. I stress that I am not drawing a conclusion on that matter, merely raising what I believe to be valid issues that need to be addressed.

In the United States, there is a school of thought that DNA testing should only be targeted at children within families where there is a history of a particular serious condition. In other words, there is a question of what benefit there is in engaging in non-specific testing where there is no indication of a reason to be concerned about the child's health. These are legitimate questions to think carefully about when making our answer. It is important, in making that answer, that we do not obstruct necessary testing.

It is acknowledged that any form of DNA screening or sequencing is costly and time-consuming. I heard Senator Norris's figures on that. Somebody contacted me to say that there was a wait of over a month for a genetic test for haemochromatosis which cost €70. I am not certain how these procedures are to be costed and done in a cost-effective way. There are significant shortages in our maternity services, with chronic shortages of both midwives and obstetricians. We are well below the staffing levels which would be considered safe by international standards. It is wrong that, notwithstanding these shortages, €12 million has been diverted from maternity services to pay for abortions out of taxpayers' funds. Money which was previously allocated to safely delivering babies is now being spent on ending their lives. I noticed that Senator Norris very honestly and baldly asked a question with great logic and reasonableness, even though we come from a different perspective. If one takes as a given what I never will take as a given, that unborn children's lives can be taken away with the protection of the law, and there is a situation, as we have, in which there are tax-funded abortions, then a fortiori, money needs to be spent on saving lives. Choices need to be made and that is why it is legitimate to consider the various pressures on our health system when one considers taking on another social good which will come at a financial cost.

If DNA screening is to be introduced for newborn babies, the Minister needs to explain how, at a time when the services which safely bring these newborns into the world are under pressure and having their resources reduced, we can devote resources to introduce a relatively expensive system of screening for those same newborns. If any such investment was not carefully costed and linked closely to the social good that would flow from it, it would not serve the taxpayer well. Beyond maternity services, the crisis continues. There are 10,000 children who have been waiting for 18 months or more to see a specialist, including 3,000 waiting to see orthopaedic surgeons. We need to invest in those basics, as well as aspiring to have gold standard treatments. I am asking questions and far from drawing a firm conclusion. This motion talks about the potential savings for the Exchequer but it seems that such testing would need to be specifically targeted at high risk cases. I could be wrong about that and others may have a different view.

Genetic testing is an enormous cash cow for the pharmaceutical industry. Eurofins Biomnis, the company which produces the "Harmony" test, and which, to be fair, employs a large number of people in Dungarvan, has made substantial profits. There is nothing wrong with profits per sebut it is important to be aware of the interests involved. There have been allegations that doctors have an unhealthy or inappropriate financial interest in promoting such tests in certain cases. This has prompted the General Medical Council in Britain as well as the Medical Council here to issue warnings about potential conflicts of interests. These are all matters to be very carefully considered and I hope I do not appear to be obstructive. One has to look at the issue in the round, from all reasonable perspectives.

I note that the motion is specifically confined to DNA screening of newborn children, but this cannot be divorced entirely from the issue of neonatal screening. I mentioned false positive and false negative results and the potential stress to parents. The House is aware of the recent case in Holles Street, where a false positive test ended up costing a child his or her life and causing devastation to the child's parents. I hoped that the Minister, Deputy Harris, would still be here when I raised this because it would have been an opportunity for me to ask for an answer. I raised this case at the Joint Committee on Health last week on foot of a letter from solicitors representing the parents. It is fair to say that they feel they are in the dark and are not being kept informed. Perhaps something has emerged since then to give the lie to that but there is an issue here with regard to whether the Department of Health is treating the family with the respect they deserve, in keeping them fully abreast of everything that is happening. It was not clear at the meeting whether a HSE investigation is supposed to be happening. The Government has been slow to give clarity on the case compared with other high profile cases. I get the impression that there is almost a wish that it would go away. I know an investigation of sorts is taking place but I wonder what kind of accountability exists between the hospital, the HSE and the Department of Health, given the significant issues of public interest that arise here, whatever one's views are on the morality, rightness, wrongness or injustice of abortion. I decided to ask this when I saw the Minister come into the House because these debates offer an opportunity to ask questions about connected areas.Perhaps the Minister of State will help me in that regard now that I have raised it in his presence. Although I have a fear that the adoption by the State of DNA testing of newborns could lead to calls for the State to provide such testing for childrenin uteroand perhaps even to demand it in certain cases-----