Opting For Deemed Consent Organ Donation In Northern Ireland

Opting For Deemed Consent Organ Donation In Northern Ireland Presented by: Mrs. Reed-Berendt Date: 23 November 2022 About The Project - Qualitative socio-legal study of how opt out legislation for organ donation was passed in the four UK nations (Wales, England, Scotland and Northern Ireland) - Documentary review and interviews with key stakeholders - Framing: what was the problem represented to be? (Bacchi) - Aims: identify points of similarity and difference, key actors, connections. The Previous Framework For Deceased Organ Donation In The UK - England, Wales and Northern Ireland: Human Tissue Act 2004 • Requirement for informed consent ("appropriate consent") for the removal, storage and transplantation of organs - Scotland: Human Tissue (Scotland) Act 2006 • Requirement for authorization for removal and use of part of adult's body after death for purposes of transplantation What Is Soft Opt Out? - You can opt in (by signing up to the organ donor register) - You can opt out (also through the organ donor register) - If you do not express a wish during your life, you will be deemed to have consented to/authorized use of your organs after your death ("deemed consent") - Your family will still be involved in the decision Soft opt Out: A UK-Wide Movement - 2008 • Organ Donation taskforce does not recommend an opt out system be introduced - 2013 • - - Human Transplantation (Wales) Act 2013 2019 • Organ Donation (Deemed Consent) Act 2019 • Human Tissue (Authorization) (Scotland) Act 2019 2022 • Organ and Tissue Donation (Deemed Consent) Act 2022 Northern Ireland: Devolution - Power-sharing executive (per the Belfast Agreement and Northern Ireland Act 1998) - Ministers are selected through the d'Hondt formula - 90 Members of Legislative Assembly (MLA) elected from 18 constituencies. - Significant divisions remain between the key political parties Initial opposition: 2015-2016 - On 13 October 2015, Jo-Anne Dobson MLA brought forward a Private Members' Bill to the Assembly which sought to introduce soft opt out. - The Bill was not supported by the Health Committee and strongly opposed by transplant clinicians - One aspect of the Bill was adopted: a duty to promote organ donation on ministers 2017: Collapse Of Power-Sharing - January 2017: local political tensions led to the collapse of power-sharing in the Executive. - With no executive or Assembly, no new legislation of policy could be passed. Because of the previous Bill, it was also hard to get opt out on national agenda: • "With no government in place, [civil servants] have to, I suppose, go with the latest status quo or whatever, and it was, like, "no, we tried that, we have something else in place"... very clearly we were told... if you mention the change of law, the words soft-opt out organ donation, deemed consent, any of this, we can't share, we can't be seen to be supporting." - July 2018: Launch of the Donate4Dáithí Campaign, which began to campaign for soft opt- out at a local level. January 2020: Stormont Returns - Robin Swann MLA (Ulster Unionist Party) became Health Minister under the d'Hondt system - Early meetings took place with Donate4Daithi and the Convenors of the Health Committee. - A meeting was planned with Robin Swann but due to the onset of the pandemic this was postponed. - In summer 2020, Robin Swann announced his intention to bring a Ministerial Bill introducing opt out. Autumn 2020 Consultation: How, Not If - "What we were looking at was saying this isn't about should we or shouldn't we; what we want to know is how are we going to do it, and that was a conscious decision by the team. Because obviously there was a sort of question that you could raise your objections to it, within it. But.. the Minister has made this decision, we're going down the opt-in system, how can we best do this? Rather than should we or shouldn't we do an opt-in system." - "I think by [the minister] coming out strongly from the start saying, this is how we're going to introduce it, not if, was just him publicly giving his commitment to making this happen. I think it was just a sign of the strength of his support really and the fact that so much of both media and Parliamentary scrutiny had happened last time round that, it just gave an acknowledgement to that as well, I think, that it wasn't like this was a brand new concept that we're trying to sell to people." - "It was a fait accompli. There was no "what do you feel about it?" It was, 'this is what's happening, the Minister's decided and you'll get your chance to speak." June 2021: A Crucial Time - "There was a period of time between the consultation closing it was quite quiet.... in the midst of all of this we had the pandemic, we had politicians breaking lockdown rules, causing political instability, we had Brexit negotiations, we had the Protocol opposition. So from week to week you really didn't know was the Assembly going to fall again and, therefore, legislation not be able to be passed? - So, we found ourselves in May/June 2021 realising that if this legislation process[...] didn't start asap there was not going to be enough time left in the mandate to get it completed." - The biggest problem we had was actually getting it into the Assembly. When we went initially for it, Arlene Foster was the [DUP] First Minister, and she had raised a few objections to it[...] then, all of a sudden she lost her job and we were dealing with Edwin Poots, who was then in the post for a while. And he was totally against it. He then lost his job four weeks later, and we had Paul Givan, who was then First Minister. But he... he couldn't make any decisions himself, he had to go to the DUP committee and get that. So, basically it was being blocked" Into The Assembly: (Relatively) Plain Sailing - The Bill was introduced to the Assembly on 5 July 2021 and passed on 8 February 2022 - With cross-party support, no amendments were introduced at all: • "we also knew that if we had got it to the floor of the Assembly then we knew that a majority of the parties had already come out and publicly supported and said that they were fully in support of the legislation" - Its passage was unaffected by the resignation of Paul Givan and collapse of powersharing in February 2022. Discourse - "It was really the fact that we were falling behind the rest of the UK at that stage and it was bringing us up" - "It's about shifting that perception. It's about changing the default to donation and making refusal the exception, you know? And then by which you're just changing the culture." - "The way I looked at it and I've said this many times is that this change of law, it won't be a magic wand... but looking at what the law meant and what the small changes it would be, the way I looked at it is that it would be so important because it would be a stab in the right direction of that normalization" - "we're going to the party at the right time, we're ready, and with all the infrastructure now in place and a chance for an improvement of that infrastructure, we're ready" The Benefits Of Going Last - Both in writing legislation: • "we practically mirrored England... we could write [the legislation] completely fresh, but if it works in England, it will work here, so it was a case of us tweaking it. Again, so we were appointed two members of [the England Bill] team that we liaised with on the writing of the draft... - And onto implementation... • We are coming to the party late here, so, you know, we might as well, they've got experience of, got knowledge and, in fact... there's a representative from England, Scotland and Wales sitting on [the project board as advisors]... they can say, 'well actually, we found that you need to do this and you need to do that' and it was absolutely brilliant, first class. So they're there, the regular point of contact if we need advice to go to them and they're there."