Before I deal with Seanad amendment No. 1, the Minister wishes to speak.
Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Bill 2022: From the Seanad
The Dáil went into Committee to consider amendments from the Seanad.
I am advised that the Leas-Cheann Comhairle has been given a note on this and is facilitating it.
A number of incorrect cross-references are contained in the Bill which are the result of a technical IT error.
I should point out, before the Minister continues, that I am allowing this because these are technical corrections and they are not up for debate. I am allowing this where the Minister makes his request for a direction.
I thank the Leas-Cheann Comhairle. I appreciate her facilitating this. I am seeking to invoke Dáil Standing Order 196 and request that the Leas-Cheann Comhairle, as Chair, direct the Clerk to carry through the necessary corrections. They are purely technical. They are as follows: the reference to "section 52(2)" on page 8, line 10, should read ‘"sections 39(2)(b)"; "section 52" on page 45, line 7, should read "section 39"; "section 39" on page 45, line 9, should read "section 52"; "section 38" on page 47, line 27, should read "section 39"; "section 40(2)(e)" in page 48, line 29, page 49, lines 16 and 19, and page 50, line 20, should read "section 40(2)(a)"; "section 39" on page 57, lines 20 and 22, should read "section 38"; "section 53" on page 58, line 12, should read "section 52"; and, finally, "section 41" on page 66, line 18 and page 68, line 28, should read "section 40".
Under the terms of Standing Order 196, I hereby direct the Clerk to incorporate the changes as requested.
I would have made the same changes.
No doubt.
Seanad amendments Nos. 1, 9, 10, 27 and 28 are related and will be discussed together.
Seanad amendment No. 1:
Section 1: In page 8, line 15, to delete "Coroners Acts 1962 to 2023" and substitute "Coroners Acts 1962 to 2024".
I will come to the amendments immediately, but I would like to acknowledge some of the people we have in the Gallery with us this evening. We have six-year-old Ally Whitson from Dublin. Ally received a life-saving kidney transplant from her dad when she was four. She was on nightly dialysis for 13 hours a night for two years. I met Ally and her mum, Michelle, earlier on, and I want to welcome Ally here tonight.
John Brennan, from Louth, got a heart transplant in 2018 and it has been life-saving and life-changing. Mr. Brennan is currently awaiting a kidney transplant. Nine-year-old Sam Kinahan is with us this evening. Sam is from Dublin. He started dialysis at just four months' old and at the age of five, he got a kidney from his dad. A good friend of mine who is waiting on a kidney, Councillor Gail Dunne, and his family are watching in Wicklow town. I wanted to welcome everybody to the Gallery this evening. They have been waiting for this day for a very, very long time.
The amendments in the group are technical amendments to update references to the Coroners Acts throughout the human tissue Bill to take account of the recently passed legislation. These amendments have no material impact on the provisions of the Bill.
I might wait to the next group. I merely want to make some general points.
Whenever the Deputy wants.
I could do it now. I will make one contribution only and I will be supporting all of the amendments. I, too, welcome all of those to the Public Gallery. They all are very welcome. This Bill has been a long time coming. Many of the substantial issues in relation to children's coronary services, but also issues in relation to how organs were disposed of in the past in certain parts of the country, are obviously emotive issues that needed to be dealt with and are being dealt with.
I, too, know many people who have had organ transplants. It is a huge undertaking but it is also, as we know, life-saving and life-changing. What we are doing in this Bill is obviously really important and I commend the Minister on bringing it forward.
I will make a number of quick points in the sole contribution that I will make. First of all, I thank the Minister for all of the work that has been done and, indeed, all of his officials. I also thank the Irish Kidney Association and many others who have strongly advocated for change in this area.
We had some very lengthy discussions on Second and Committee Stages on some of the concerns that some organisations had and the Minister has been generous in working with those in opposition and, indeed, the health committee, and we were able to reach an accommodation on many of the issues which is good for everybody.
As I said, the Bill is an important piece of legislation that will, among other things, provide for an organ donation opt-out register on a deemed-consent basis and provides for the regulation of the possession, retention or disposal of organs and human issues. There was a number of difficult and emotive "Prime Time" programmes that the Minister and I would have seen where we had some tragic circumstances of organs that were disposed of absolutely incorrectly. Body parts were sent to be incinerated outside of Ireland without the consent of parents of children, for example. That can never, ever happen again. As far as I am concerned, once this Bill is passed, I do not envisage that happening again. We are now putting in place a robust legal framework and that is a really important step. We all want to get this right, and needed to get this right which is why there had to be a lot of careful work done. There are lots of elements to this Bill but this is one of the parts I really feel is important that we need to welcome.
The Minister will recall that Britain introduced a human tissues Bill in 2004. Since then, as the Minister will be aware, we had the Madden report, the retained organs audit, the Carter report and, more recently, a series of scandals in hospitals across the State relating to the improper retention of organs, as I said.
The Bill is welcome in that it places previous guidelines on a firm statutory footing. That was something my party leader and I have been consistently calling for for a long number of years. I am really happy that this is now happening. I hope that we will see real accountability for any future breaches.
I believe there is an awful lot more to be done in relation to capacity in this area as well. There is a small number of paediatric pathologists, for example. It is a really specialised area. There is scope to work on an all-island basis, particularly with the Executive now up and running, to progress some of those matters.
Like all Bills, there are a lot of Bills that we have discussed in recent times in health where we are building in reviews. That is important because we want this to work. We want it to be as effective as possible. We had different opinions from different organisations and a debate on opt-in, opt-out and how all of that was going to work. In my view, we have now landed on a position where we need to give it time to work. Let us put it in place, let us pass this Bill and let us give it time to work and we will have a chance in the future to come back to evaluate the effectiveness of the Bill.
This is an important day for those advocate groups, the Irish Kidney Association and many others who have been campaigning for this.
I want to strongly commend the Minister on the work he has done. Maybe I do not get enough chances to do that but I will take the chance today to do that. This is a really important Bill. I was very privileged and happy to be part of the process and I look forward to its passage. I will not be making any further contribution. I will support all the amendments.
Seanad amendment agreed to.
Seanad amendments Nos. 2 to 8, inclusive, 11 to 15, inclusive, 20, 21, 36 and 37 are related and will be discussed together.
Seanad amendment No. 2:
Section 2: In page 8, between lines 19 and 20, to insert the following:
“ “Act of 2015” means the Assisted Decision-Making (Capacity) Act 2015;”.
As flagged during Report Stage in this House, I brought forward a number of amendments in the Seanad to align the Human Tissue Bill with the Assisted Decision-Making (Capacity) Act 2015. These amendments include the insertion of definitions including: “Act of 2015” to refer to the Assisted Decision-Making (Capacity) Act 2015; “capacity”, which will be construed in accordance with the 2015 Act. That provides for a functional assessment of capacity to be undertaken, which is the appropriate means of conducting capacity assessments in the State; and “decision-making representatives” and “decision-making representation orders”, which will be construed in accordance with the 2015 Act.
These amendments also update the term previously referred to as “specified family member” to that of “specified person”. For the purposes of this Bill, a “specified person” is a person who may give “appropriate consent” in certain situations where a living adult who lacks capacity may be involved in the donation of organs, tissues, or cells. The updated term better reflects the scope of different persons captured who are not necessarily family members.
In addition to updating the term, the list of different “specified persons” in section 25(4) is proposed to be revised. The current list has been reviewed to ensure that there is consistency across this Bill and the Assisted Decision-Making (Capacity) Act 2015.
Following this review, and engagement between my officials and the Department of Children, Equality, Disability, Integration and Youth, I am including in the list of “specified persons”, “decision making representatives” as defined in the 2015 Act where the terms of the decision-making representation order confers such functions. Further, I am removing references to attorneys appointed under the Powers of Attorney 1996 Act, given the nature of the matters for which appropriate consent is sought.
A new section, section 105 is being inserted. Currently, both the human tissue Bill and the Assisted Decision-Making (Capacity) Act 2015 contain provisions governing the donation of organs by living persons lacking capacity, however there are differences in the arrangements for dealing with such donations. This new section amends the relevant provision of the 2015 Act and provides that matters relating to the donation of an organ from a living person lacking capacity will be determined in accordance with the human tissue legislation.
A number of consequential technical amendments are also being made including an amendment to the Long Title of the Bill.
Seanad amendment agreed to.
Seanad amendment No. 3:
Section 2: In page 8, between lines 26 and 27, to insert the following:
“ “capacity” means, in relation to a person, his or her decision-making capacity and shall be construed in accordance with section 3 of the Act of 2015;”.
Seanad amendment agreed to.
Seanad amendment No. 4:
Section 9: In page 18, between lines 4 and 5, to insert the following:
“ “specified person” has the meaning assigned to it by section 25(4);”.
Seanad amendment agreed to.
Seanad amendment No. 5:
Section 10: In page 20, to delete line 5 and substitute “section 31,”.
Seanad amendment agreed to.
Seanad amendment No. 6:
Section 10: In page 20, line 7, to delete “specified family member” and substitute “specified person concerned”.
Seanad amendment agreed to.
Seanad amendment No. 7:
Section 10: In page 20, line 8, to delete “section 30.” and substitute the following:
“section 30,
(vii) in relation to a case to which section 25(2) applies, by the specified person
concerned, or
(viii) in relation to a case to which section 26(2) applies, by a parent or guardian of the child.”.
Seanad amendment agreed to.
Seanad amendment No. 8:
Section 10: In page 20, line 17, to delete “(vi)” and substitute “(viii)”.
Seanad amendment agreed to.
Seanad amendment No. 9:
Section 13: In page 22, line 31, to delete “Coroners Acts 1962 to 2023” and substitute “Coroners Acts 1962 to 2024”.
Seanad amendment agreed to.
Seanad amendment No. 10:
Section 16: In page 24, line 10, to delete “Coroners Acts 1962 to 2023” and substitute “Coroners Acts 1962 to 2024”.
Seanad amendment agreed to.
Seanad amendment No. 11:
Section 25: In page 30, lines 7 and 8, to delete “specified family member of the living adult.” and substitute “specified person concerned.”.
Seanad amendment agreed to.
Seanad amendment No. 12:
Section 25: In page 30, to delete lines 15 to 20 and substitute the following:
“ “decision-making representative” has the same meaning as it has in section 2 of the Act of 2015;
“decision-making representation order” has the same meaning as it has in section 2 of the Act of 2015;”.
Seanad amendment agreed to.
Seanad amendment No. 13:
Section 25: In page 30, line 21, to delete “specified family member” and substitute “specified person”.
Seanad amendment agreed to.
Seanad amendment No. 14:
Section 25: In page 30, between lines 22 and 23, to insert the following:
“(a) a decision-making representative where the terms of the decision-making representation order made in that regard under section 38(2)(b) of the Act of 2015 confers functions on the representative concerned in respect of the matter;”.
Seanad amendment agreed to.
Seanad amendment No. 15:
Section 25: In page 30, to delete lines 24 to 30.
Seanad amendment agreed to.
Seanad amendments Nos. 16, 29 and 35 are related and will be discussed together.
Seanad amendment No. 16:
Section 26: In page 30, to delete line 37 and substitute “consent has been given by a parent or guardian of the child.”.
These are technical amendments which rephrase provisions for clarity or update incorrect references to other provisions. They will have no material impact on the provisions of the Bill.
Seanad amendment agreed to.
Seanad amendments Nos 17 to 19, inclusive, and Nos 22 to 26, inclusive, are related and will be discussed together.
Seanad amendment No. 17:
Section 30: In page 33, line 14, to delete “Where a donation of regenerative tissue is proposed in accordance with section 25,” and substitute “Where a donation of regenerative tissue and cells is proposed in accordance with section 25(3),”.
These are technical amendments which update previously incomplete references to “regenerative tissue” to that of “regenerative tissues and cells”, a term already defined within the Human Tissue Bill.
Seanad amendment agreed to.
Seanad amendment No. 18:
Section 30: In page 33, line 16, to delete “regenerative tissue” and substitute “regenerative tissue and cells”.
Seanad amendment agreed to.
Seanad amendment No. 19:
Section 30: In page 34, line 1, to delete “regenerative tissue” and substitute “regenerative tissue and cells”.
Seanad amendment agreed to.
Seanad amendment No. 20:
Section 30: In page 34, line 4, to delete “family member” and substitute “person”.
Seanad amendment agreed to.
Seanad amendment No. 21:
Section 30: In page 34, line 15, to delete “family member concerned as the case may be” and substitute “person concerned, as the case may be”.
Seanad amendment agreed to.
Seanad amendment No. 22:
Section 30: In page 34, line 21, to delete “regenerative tissue” and substitute “regenerative tissue and cells”.
Seanad amendment agreed to.
Seanad amendment No. 23:
Section 31: In page 34, line 28, to delete “regenerative tissue” and substitute “regenerative tissue and cells”.
Seanad amendment agreed to.
Seanad amendment No. 24:
Section 31: In page 34, line 30, to delete “regenerative tissue” and substitute “regenerative tissue and cells”.
Seanad amendment agreed to.
Seanad amendment No. 25:
Section 31: In page 35, line 19, to delete “regenerative tissue” and substitute “regenerative tissue and cells”.
Seanad amendment agreed to.
Seanad amendment No. 26:
Section 31: In page 35, lines 36 and 37, to delete “regenerative tissue” and substitute “regenerative tissue and cells”.
Seanad amendment agreed to.
Seanad amendment No. 27:
Section 38: In page 44, line 11, to delete “Coroners Acts 1962 to 2023” and substitute “Coroners Acts 1962 to 2024”.
Seanad amendment agreed to.
Seanad amendment No. 28:
Section 40: In page 47, line 29, to delete “Coroners Acts 1962 to 2023” and substitute “Coroners Acts 1962 to 2024”.
Seanad amendment agreed to.
Seanad amendment No. 29:
Section 53: In page 57, line 17, to delete “section 1” and substitute “section 2”.
Seanad amendment agreed to.
Seanad amendments Nos 30 to 34, inclusive, are related and will be discussed together.
Seanad amendment No. 30:
Section 57: In page 64, to delete lines 29 to 31 and substitute the following:
“ “ ‘Authority’ means the Health Information and Quality Authority;”.
These are technical amendments to update references to the Bill that are being inserted into the Coroners Acts. The Bill was previously referred to as the “Act of 2023” and these references are being updated and replaced by the Short Title of the Bill. These amendments will have no material impact on the provisions of either piece of legislation.
Seanad amendment agreed to.
Seanad amendment No. 31:
Section 57: In page 65, line 16, to delete “Act of 2023” and substitute “Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Act 2024”.
Seanad amendment agreed to.
Seanad amendment No. 32:
Section 58: In page 66, line 18, to delete “Act of 2023” and substitute “Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Act 2024”.
Seanad amendment agreed to.
Seanad amendment No. 33:
Section 60: In page 68, line 29, to delete “Act of 2023” and substitute “Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Act 2024”.
Seanad amendment agreed to.
Seanad amendment No. 34:
Section 60: In page 71, line 39, to delete “Act of 2023” and substitute “Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Act 2024”.
Seanad amendment agreed to.
Seanad amendment No. 35:
Section 104: In page 115, line 2, to delete “section 7(1)” and substitute “section 7(2)”.
Seanad amendment agreed to.
Seanad amendment No. 36:
New Section: In page 115, between lines 17 and 18, to insert the following:
“Amendment of Act of 2015
105. The Act of 2015 is amended, in section (4)(3), by the substitution of the following paragraph for paragraph (a):
“(a) any decision regarding the donation of an organ from a living donor shall, where the donor is a person who lacks capacity, be determined in accordance with the Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Act 2024, and”.”.
Seanad amendment agreed to.
Seanad amendment No. 37:
Title: In page 7, line 22, after “amend” to insert “the Assisted Decision-Making (Capacity) Act 2015,”.
Seanad amendment agreed to.
I would like to say a few words. First, I thank colleagues across the Dáil and Seanad for their support with this Bill. It has been a very constructive and collaborative process and we have an important Bill. This is an important day for everyone in the country who is waiting for an organ transplant.
Today, 601 people and families are waiting on an organ transplant and there will be many thousands into the future. Today is all about them. One of the important things we are doing with this Bill is moving our country from an opt-in organ donation service to an opt-out service. That means that there will be more viable organs available, more lives will be saved and more families will be supported. The aim is to make organ donation the norm in Ireland where a person passes away and where a donation is possible.
This legislation has been sought for a long time. It goes back nearly 15 years. There are many groups I wish to acknowledge within the Irish donor network. First and foremost are all the donor families for everything they have done. I also acknowledge the Irish Kidney Association, whose representatives are here with us this evening and who have been front and centre on this legislation the whole way through, as well as the Irish Heart and Lung Transplant Association; Cystic Fibrosis Ireland, the Irish Lung Fibrosis Association, the Alpha-1 Foundation; the liver transport plant unit in St. Vincent’s University Hospital; hospital transplant co-ordinators, Children’s Liver Disease Ireland, Heart Children Ireland and the eye and bone banks. I acknowledge all of them and the strong support they have provided.
Last year, we had 265 transplants. We aim to increase that this year and in the years to come. One of the measures I have announced today to coincide with the passing of this Bill is an additional €1.6 million in annual funding to further improve and support our national organ donation services.
The Bill includes very important reforms of post-mortem practice and anatomical examination. We have had too many situations in Ireland where the remains, particularly of babies, have not been handled in an appropriate way, where families were not consulted and where family’s wishes were not respected. This Bill puts the family front and centre in everything to do with the handling of remains. It seeks their permission for everything and ensures that anything that is done is in the interests of the families. It makes it impossible - certainly it makes it against the law - for anyone to do some of the things we have seen previously where disposal was not appropriate and families were not consulted. That is important. The aim here is to ensure that anything that is done in what can be an extraordinarily difficult and sensitive time is done with regard to the family’s wishes and with due regard to dignity, bodily integrity and the privacy of the deceased as well.
This is a good day, a Leas-Cheann Comhairle and the Bill will now wing its way to the President. Hopefully we will get it back shortly and we will begin to enact these measures. We will continue to fund and to ensure that all of those people out here around our country have the best and earliest possible chance of a life-saving organ donation.
Seanad amendments reported.
Agreement to the Seanad amendments is reported to the House and a message will be sent to the Seanad acquainting it accordingly.