Organ Donation (Deemed Consent) Bill

Baroness Deech Excerpts

2nd reading (Hansard): House of Lords
Friday 23rd November 2018 Lords Chamber

[Baroness Deech (CB)]

My Lords, at first sight this Bill is welcome and straightforward. It certainly is welcome, and appreciation is due to the noble Lord, Lord Hunt, and to all those who have promoted it.

I admit that my views are coloured by having been chair of the Human Fertilisation and Embryology Authority, dealing with associated but by no means identical matters. During my tenure, we had to deal with the Diane Blood case, where sperm was removed from her husband just before and just after his death without any consent. Of course, consent is absolutely central to the Human Fertilisation and Embryology Act. The lack of consent was got around by referring in part to the European law on the free movement of goods and services, which apparently included sperm. Nevertheless, the removal of the sperm was a flagrant breach of the law. The law was re-emphasised in the later statute, which pointed out that one cannot take anything from a body, alive or dead, without consent. This Bill goes the other way. Of course, sperm is not an organ, but I thought I should refer again to this notorious case, which highlighted the importance of consent.

As has been said, the BMA supports the shift to an opt-out system. In Wales, which has an opt-out system, consent rates rose from 58% to 72% in the two years to 2017, albeit reflecting very small numbers. So I give a hearty yes to the principle, but with a few words of caution and support. The BMA calls for the appropriate,

“publicity and engagement with the public”.

It highlights the need to balance increased donation with,

“the wishes and autonomy of those who donate”,

and their families.

Somewhat surprisingly, the very expert Nuffield Council on Bioethics did not originally recommend a change to an opt-out system, because, as it said, there was a,

“lack of evidence that such a change alone would increase organ donation rates”,

and because of ethical concerns about the operation of the scheme. Now, the Nuffield Council, accepting the situation as it is in this Bill, emphasises how it can be made to work ethically. It says,

“it is vital to have measures in place that encourage people to express and document their wishes about organ donation during their lifetime”.

A free choice in this or any other field is only legitimate if people are well informed and aware of the significance of their choice.

The Nuffield Council further says that,

“information about the donation process must be easily accessible”.

It is not enough to have a publicity campaign when this Bill is passed. It needs to be maintained on an ongoing basis so that those who might donate, but are not thinking about it now, are as aware in the future as those who benefit from the publicity that will no doubt accompany this Bill’s success.

The Nuffield Council also says that families must,

“stay at the heart of the decision-making”,

process, and that their refusal of consent should be respected even where the deceased indicated a willingness to donate. To appear to have lower regard for the wishes of the family in their moment of bereavement would make their dilemma even more poignant and might make others suspicious of what might happen when a loved one dies.

The Nuffield Council suggests that a solution is to invest further in the network of specialist nurses for organ donation, who can support bereaved families. So the Nuffield Council is opening up the debate to the wider context and emphasising the need to maintain trust in the system. This is important when one recalls the Alder Hey scandal of retained organs 30 years ago, which led to the Human Tissue Act and dealt a serious blow to public trust in the handling of tissues and organs by hospitals—trust which has only now recovered and should not be risked again.

I should point out that one can also foresee legal disputes over the meaning of the provision in the Bill that there is no deemed consent where friends or family provide information that would lead a reasonable person to conclude that the deceased would not have consented to donate in his lifetime. That is in Clause 1(4) inserting the new subsection (6B) into the Human Tissue Act 2004. Any legal delay in decision-making would necessarily be fatal to the successful removal of the organ, which has to be done swiftly. I envisage that any information brought forward at the time of death that the deceased might not have consented, reasonable or not, would act to stop the removal.

There were also concerns on the part of faith groups, which I believe have been successfully addressed and handled. The Government should be thanked for listening. In Judaism, as the noble Lord, Lord Leigh, said, there is nothing more important than saving a life. Religious strictures yield to that, and donating organs is invaluable. Jews and some other faith communities have a commitment to bodily integrity that extends through life to death. Therefore it is critical for them to retain an element of donor and then family control in the system.

The letter from Ms Doyle-Price, Parliamentary Under-Secretary of State for Mental Health and Suicide Prevention—what a bag of responsibilities she has—which the noble Lord, Lord Leigh, referred to, was sent to the Board of Deputies of British Jews, dated 25 October, and was very welcome. The Board of Deputies represents mainstream Judaism. In that letter, the Minister confirmed that the concept of deemed consent applies only in the absence of a decision by the deceased or their appointed representative to consent or not consent, and that the method for signifying non-consent is not limited by the Bill.

The letter also said that, if an individual cannot be identified or a person in a qualifying relationship cannot be found, the organ donation will not take place, since they have to be consulted. Individuals will also be allowed to consent to donate organs selectively or conditionally. And a new faith option will be included in the organ donor register, where organ donors can request that their faith is taken into account when organ donation is in issue; the text on the register will say, “I would like NHS staff to speak to my family and anyone else appropriate about how organ donation can go ahead in line with my faith or beliefs”; and appropriate agencies will engage with faith and minority communities in developing guidance that addresses those concerns.

This letter provided faith and minority communities with the comfort that the change in the organ donation system will respect beliefs while helping to save lives. Along with the noble Lord, Lord Leigh, I ask the Minister to confirm that those assurances will be upheld.