Draft Human Tissue (Permitted Material: Exceptions) (England) Regulations 2020

Baroness Deech Excerpts

Monday 18th May 2020 Lords Chamber

[Baroness Deech (CB)]

My Lords, I have another question about the section raised a moment ago by the noble and learned Lord, Lord Mackay. The Organ Donation (Deemed Consent) Act 2019 inserts the following into the Human Tissue Act:

“The person concerned is to be deemed”—


for the purposes of another subsection—

“to have consented to the activity unless a person who stood in a qualifying relationship to the person concerned immediately before death provides information that would lead a reasonable person to conclude that the person concerned would not have consented,”

“reasonable” being a word much loved by lawyers. I spoke about this at Second Reading of the organ donation Bill in 2018. I raised then the issue of donation by members of faiths that are, in general, opposed to organ donation. There has been much discussion of this issue. The codes of practice emphasise the sensitivity surrounding this and encourage discussion with the family. There remains an ambiguity, in relation to which I would like the Minister’s clarification. The then Minister in 2018, the noble Lord, Lord O’Shaughnessy, said at the conclusion of Second Reading that

“no family will be forced to agree with the donation if they are strongly opposed to it,”—[Official Report, 23/11/18; col. 426.]

even when the deceased had expressly wished to be a donor. Yet the code of practice says that where the family disagrees with the deceased’s wish to donate, the specialist nurse should explore any issues raised by the family and support them to address their concerns.

Where indicated, the nurse can facilitate consultation with religious and non-religious leaders to provide counsel or clarification on donation. This is in paragraph 37 of revised Code of Practice A. I am not sure what this means or how the nurse can come to an acceptable conclusion in what must inevitably be a distressing and hurried period.

Judaism puts the saving of life as a priority, but significant elements within it believe that the body should not be interfered with. Is it to be the case that, where the family disagrees with the deceased’s wish to donate, or where he or she has made no declaration and is deemed to consent, the family will have to show that the deceased was expressly against donation, even though he or she had made no declaration to that effect? In other words, will the onus be on the family to prove that the deceased would definitely not have wanted to donate, or is it the other way around—that the presumption is in favour of donation and the nurse is to help the family come to terms with it? Need the family only object, full stop, to prevent donation? The code refers to reasonable information that would lead a reasonable person to believe that the deceased would not have wanted to donate, but this does not answer the question. There seems to be a different level of proof of objection, depending on whether the deceased made no declaration or wanted to donate.

I add, on accepted materials and from my experience as chair of the Human Fertilisation and Embryology Authority, that few actions can be more unethical than the removal without express consent of a person’s reproductive tissues—eggs, sperm and embryos. For that to be contemplated is not, like the rest of this law, a life saver or for medical purposes, but to satisfy the wish for a child by another party. It is illegal and it is quite right that this is spelled out, and that the distinct provisions on donation of gametes are in separate legislation. I hope this is the culmination of a long process directed towards increasing the availability of organs for transplantation. It is very welcome.