Alice-Mary Higgins (Independent) | Oireachtas source

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.