Organ Donation (Deemed Consent) Bill

Lord Anderson of Swansea Excerpts

Committee: 1st sitting (Hansard): House of Lords
Friday 1st February 2019 Lords Chamber

The key consideration here is the word “information” and what we mean by it.

[Lord Anderson of Swansea (Lab)]

The noble Lord, as always, puts his case very well. What is the position if the family is divided?

[Lord McColl of Dulwich]

My solution is to have transplant nurses, who are key to this whole problem. They are essential in dealing with the family, explaining the situation and getting it to discuss it in a sensible way. But I agree that that would be a problem.

If the Minister is able to assure me that the Government intend that the word “information” should be widely defined so that, for instance, if someone was to say, “I am convinced that my husband was unaware of the deemed consent law and would have opted out had he known; therefore, you should not take his organs”, this would count as valid information and prevent the deeming of consent. This would reassure many people with concerns about the deeming of consent.

In most cases, there would be no means of proving in a court of law that the husband was unaware, so if that is what the wife says, it should be accepted. If people knew this, they would feel less threatened—that the state was trying to supplant them and their family, and other people and their families—and be less likely to opt out. This approach is entirely consistent with what the Government propose with respect to faith communities. If a Muslim wants to be a donor and carries one of the proposed new faith-specific organ donor cards, it means that they want to donate, but subject to the views of their religion being respected. I simply seek reassurance that people will be assured that the same respect will be afforded to their families and living representatives.

In asking this question, I should stress that I am not asking the Minister to say that no doctor would ever take organs if the family was unhappy. I am of course aware that most doctors would be reluctant to do such a thing. I am asking specifically what the Government intend that the law should mean. I want to establish whether the Government intend that a doctor should, from a purely legal perspective, be able to transplant organs even if the family members provide information, based on what they believe their relative would have wanted, which suggests that consent should not be deemed. If the Minister can confirm that the Government’s intention is that “information” should be widely defined—so that if someone were to say, “I am convinced my husband was unaware of the deemed consent law and would have opted out had he known”, this would count as valid information and prevent the deeming of consent—I will withdraw my amendment.

I turn now to Amendment 3, which places a statutory obligation on the Secretary of State to make people in England aware of how deemed consent works, including through an annual advertising campaign. Quite apart from making all existing adults aware, we must remember that every year, about 760,000 people turn 18 years of age in the UK, and all those in England will need to be written to. Then we must be aware of all the people coming into England each year from other jurisdictions. Crucially, the awareness-raising and advertising provision set out in my amendment is made in the existing Welsh legislation but is missing from the Bill. My motivation in moving the amendment is exactly the same as for Amendment 1: I want us to do everything we can to limit the number of people who opt out of donation as a result of the introduction of presumed consent, for all the reasons I have already set out.

The organs of the 182,519 people who have opted out in Wales in response to the deeming of consent are completely lost from the donor system. No one had opted out previously. If Wales loses this number in a context where there is statutory assurance about advertising, thereby making it more likely that a person whose consent has been deemed really has made a donation decision, how much greater will the risk be in England if we do not provide that same assurance? We must do everything possible to limit the number who opt out in England. In order to have a credible system of deemed consent, one has to put in place the requisite infrastructure to make it reasonable to claim that anyone who has signed neither the opt-out nor the opt-in register has made a deliberate, conscious decision to become an organ donor by having their consent deemed.

This depends, critically, on a huge advertising campaign so that it is credible to suggest that the entire adult population will have seen the relevant adverts and taken on board that if they want to donate, they can give effect to that decision by doing nothing, and that if they do not want to donate they must sign the opt-out register. If one does not have a very large advertising campaign, members of the public will work out that the chances are that a significant number of individuals whose consent will be deemed will not actually make a conscious donation decision; they will have simply done nothing, not appreciating that in this context, the absence of an action is considered a decision and authorisation for organ donation. If members of the public who recognise that the law has changed suspect that the state is underinvesting in advertising and therefore cannot credibly suggest that everyone whose consent has been deemed will have decided to have it deemed, they are much more likely to feel that the state is trying to take organs without proper consent. In this context, it is more likely that people will feel like opting out. It is thus critical to reassure the public that there will be a major and ongoing advertising campaign.

On the basis of the current Bill, we are rather vulnerable on this point. In the first instance, unlike the Welsh legislation, it provides no assurance that there will be proper and ongoing investment in advertising by making it a statutory obligation which cannot be changed without an Act of Parliament. If, however, the Government accept my amendment, they will give the people of England the same assurance that has been given to the people of Wales, and that there will be a serious and ongoing advertising campaign about how presumed consent works. This will give credibility to the claim that everyone who has done nothing in respect of organ donation has made a deliberate and conscious donation decision. As a consequence, there would be less scope for people to feel offended and opt out.

In the second instance, this weakness is reflected in the fact that the advertising budget is £18 million over four years. I have two major concerns about this. First, when one allows for the fact that the adult population of England in 2017 was recorded as 43,752,473, that works out at just 41p per person over four years, or 10p per person per year. I am not convinced that this tiny sum treats people’s consent with appropriate respect. It does not allow us to conclude that everyone who has not opted out has made a deliberate and conscious decision to opt in. Others are bound to think the same, and this risks significant withdrawal from donation, because there is a greater chance that people will think the system unfair and want no part of it. In this context, one option would be significantly to increase the proposed level of advertising, making people aware that if they do not opt out, they will be treated as if they had consented to donate. To secure a credible arrangement, however, would require a lot more money over a sustained period. In contemplating that, we have to ask whether it is worth it.