Organ Donation: Opt-out System

Debate between Paul Flynn and Fiona Bruce

Thursday 13th July 2017 Westminster Hall

[Fiona Bruce (Congleton) (Con)]

It is a pleasure to serve under your chairmanship, Ms Buck. I congratulate the hon. Member for Barnsley Central (Dan Jarvis) on securing the debate and on his sensitive and compassionate tone; I hope I can reciprocate. I agree with the hon. Gentleman that it is imperative to work to increase the number of organs available for donation, because every week people in this country die because there is a shortage of available organs. The critical question that we must ask today is whether presumed consent would help with that.

Presumed consent certainly seems an attractive proposition, but perhaps I may enter a note of caution, to aid our early deliberations on the matter. One of the key legal principles I was taught as a student lawyer was that silence is no reply, which means that, much as we might like to draw conclusions from silence, there are good reasons why it may be inappropriate to do so. Introducing the principle of presumed or deemed consent would involve a major change with respect to organ donation. It would effectively mean that even if someone did nothing at all—did not sign an organ donor register, or opt out or in—a consequence would be triggered. The person’s silence would trigger a quite major action. Their organs could later be taken and transplanted. Consent would be deemed, although they would have done nothing.

Of course, some people, on seeing the publicity that might surround the introduction of presumed consent, would deliberately and knowingly decide to do nothing, aware of the consequence; they would be comfortable with that. Those people would be aware that they had, in doing nothing, effectively chosen to donate. However, there would inevitably be a significant group of people who missed the publicity altogether. We need to be sensitive to that.

Informed consent is an important principle, undergirding the relationship between the citizen and the state, so it is right that the House should explore the issue carefully, which is why I welcome the debate. It is critical to explore whether, for example, it is right in this instance to undermine the principle of informed consent by introducing presumed consent. Is it possible that that could create a precedent that might be appealed to in future for less enlightened purposes?

Some practical concerns were highlighted during the debates in Wales that preceded the legislation there, some of which I did not feel were satisfactorily resolved at the time. When the Welsh Government made the case for introducing presumed consent, they based their case, at least in part, on a piece of research by two academics, Abadie and Gay:

“Evidence...suggests that introducing an opt-out type system could result in a 25 to 30 per cent increase in deceased organ donation rates which could equate to a further 15 donors each year in Wales, each of whom...on average might donate 3 organs. This means around 45 more organs could become available to the UK pool for transplantation.”

I understand that the research compared practices in other jurisdictions, and classified Spain, the country with the highest donation rate in the world, as a presumed consent country. Spain introduced presumed consent legislation in 1979, but the law has never been implemented; Spain is still in practice an informed consent jurisdiction like England. Indeed, rates of donation there started to increase only when, 10 years later, Spain made other changes, in particular investment in the organ donation infrastructure. It increased the capacity, training and availability of medical staff to talk to families about donating the organs of a loved one when a life has tragically been cut short.

A leading expert in the field, Professor John Fabre, unsuccessfully tried to point out to the Welsh Government their misconception. In an article entitled “Presumed consent for organ donation” in the journal Clinical Medicine, he referred to their explanatory memorandum, published in December 2012, to the Bill that became the Human Transplantation (Wales) Act 2013. It stated:

“For example, an opt-out system is operated in Spain and it has the highest donation rate in the world.”

As I have said, Spain, even today, does not operate an opt-out system, so I believe that that statement was incorrect, even though it was cited in official papers in Wales, underpinning the presumed consent legislation. The recognition that the country with the highest donation rate in the world does not in fact operate a presumed consent system is important in any assessment of the efficacy of presumed consent. It is also striking that some of the countries that are least successful with their organ donation rates, including Sweden, Greece and Bulgaria, operate presumed consent.

A second objection raised during the debate in Wales was the fact that in some countries the introduction of presumed consent has been associated with significant numbers of people withdrawing from donation. Some people interpret the introduction of presumed consent, despite its noble motivation, as the state seeking to claim their organs without proper consent. Rather than seeing it as a mechanism for donation, they see it as a mechanism for bypassing consent to donation. There has been some evidence of that in Wales. Giving oral evidence to the Health and Social Care Committee of the National Assembly for Wales, organ transplant specialist Dr Peter Matthews, who was based in Morriston Hospital in Swansea, said:

“My own experience is that the British psyche has a particular view that what it should do is donate organs as an altruistic gift, and if it is felt that the state is going to take over the organs, then there is the potential that people who may have been willing to become a donor will not do so. We have seen two cases in Morriston where patients who were on the organ donation register, on hearing about this, said to their families that if the state was going to take their organs, they were no longer willing to give them. We lost two donations”.

During the debate on the Bill in Wales, three Assembly Members relayed similar stories from constituents.

I want to comment on the impact of presumed consent in Wales. NHS Blood and Transplant records donations on a yearly basis, from April to April, and the first full year of results that we have from Wales is for 2016-17. The data tell us two important things: first, in 2016-17, 61 deceased donors facilitated 135 organ donations. Far from representing the anticipated increase of 15 donors and 45 organs, that apparently constituted a decline by three donors and 33 organ donations from the previous year’s figures. That might come as something of a surprise, because some people have suggested that the system was a great success. However, under informed consent a family can donate the organs of a deceased person if the deceased has signed neither the organ donation register nor the opt-out register, which means that, as we have heard, in Wales prior to December 2015 the families or living representatives of the deceased could—as they can here—decide to donate their loved one’s organs. But under presumed consent those informed consent donations would be reclassified as presumed consent donations. Critically, that does not mean that those donations would not have happened under the old system.

Secondly, and not surprisingly, bearing in mind what Dr Matthews told the Assembly, there has been a huge increase in the number of people in Wales opting out. In 2016-17, 174,886 people in Wales were on the opt-out register. That figure far outstrips comparable figures for other parts of the UK, where consent is not presumed. Only 27,559 individuals in England, 1,834 in Scotland and 204 in Northern Ireland have opted out. That means that a staggering 85.5% of individuals in the UK who have opted out live in Wales, despite the population of Wales representing only 4.8% of the UK population.

I have cited a lot of figures, but I do so to get them on the record and to aid our debate. To appreciate fully the cost of the change in Wales, we must remember that prior to the introduction of presumed consent, people who had signed neither the opt-out register nor the opt-in register were potential donors.

[Paul Flynn (Newport West) (Lab)]

Does the hon. Lady agree with the Welsh Government’s conclusion that 40 lives have been saved under the presumed consent scheme that would have been lost under the previous arrangement?

[Fiona Bruce]

My concern is to demonstrate that we have to look very carefully at some of the evidence that the Welsh Government used to come to their conclusions.

Where someone has signed the opt-out register, conversations cannot even begin. That means that more than 174,000 of the Welsh population have effectively been removed as potential donors. Previously, in the absence of express direction to do otherwise, those people’s families, as their living representatives, might have been happy to donate their loved ones’ organs at their death. When Wales embraced presumed consent, the other UK jurisdictions said that they would wait to review the results in Wales before deciding whether they wanted to go down that path. I ask the Minister to look at the evidence.

We have significantly increased donation levels in England since implementing the recommendations of the organ donation taskforce in 2008, which of course came down very much against presumed consent. Rather than seeking to emulate Wales, England should perhaps seek to emulate Spain and put its emphasis on lowering the family refusal rate by increasing the number of clinicians who are trained and available to discuss this issue with families when the need arises—often at short notice.

Professor Fabre concluded his seminal paper in Clinical Medicine in the following terms:

“Rather than legislating for the consent of donors, we should be addressing the misgivings and misunderstandings of families so that they decline donation much less frequently, as has been done so successfully in Spain. An acceptance rate of 85% is a realistic and achievable objective for the UK over a 5-year period. As previously, we have the Spanish model to guide us. It will not be easy. It will require…a detailed plan at the national level”.

I very much hope that the Minister will consider all those points and confirm that the Government will take into account every possible consideration and concern about this issue before any legislation is introduced. I look forward to her response.

Charitable Registration

Debate between Paul Flynn and Fiona Bruce

Tuesday 13th November 2012 Westminster Hall

[Fiona Bruce]

I thank my hon. Friend.

[Paul Flynn (Newport West) (Lab)]

The difficulty is that we as a House failed to define public benefit in the Charities Act 2006; it is left to the courts. What will happen is that those who can afford the most expensive silks to argue their case are likely to triumph. Does the hon. Lady think that public benefit is well defined as far as education is concerned? Eton and Harrow have charity status, but schools on inner-city estates do not.

[Fiona Bruce]

The position regarding public benefit in education was considered thoroughly in connection with the case to which I referred earlier, so I will confine my remarks to the issue of public benefit and religious organisations, which has not been examined or judicially reviewed for some time.