Organ Donation (Deemed Consent) Bill

Geoffrey Robinson Excerpts

Committee Debate: 1st sitting: House of Commons
Wednesday 12th September 2018 Public Bill Committees

[The Chair]

Welcome to this Public Bill Committee on the Organ Donation (Deemed Consent) Bill. I will make some preliminary announcements: please switch electronic devices to silent; tea and coffee are not allowed during sittings; and a selection list for today’s sitting is available in the room, showing the order of the debates. In this case it is a single debate, so if you would like to speak, please do so in this part of the debate as there is no other option. Decisions on the amendments and clauses will take place in the order in which they appear on the amendment paper.

Clause 1

“Appropriate consent” to adult transplantation activities: England

[Mr Geoffrey Robinson (Coventry North West) (Lab)]

I beg to move amendment 1, in clause 1, page 1, line 16, leave out “relevant” and insert “permitted”.

Amendments 1 to 3 replace references in new subsection (6A) of section 3 of the Human Tissue Act 2004 to “relevant material” with references to “permitted material” which is defined in the provision inserted by Amendment 4.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 2, in clause 1, page 1, line 19, leave out “relevant” and insert “permitted”.

See the explanatory statement for Amendment 1.

Amendment 3, in clause 1, page 1, line 20, leave out “relevant” and insert “permitted”.

See the explanatory statement for Amendment 1.

Amendment 4, in clause 1, page 2, line 10, at end insert—

“‘permitted material’ means relevant material other than relevant material of a type specified in regulations made by the Secretary of State.”

This amendment defines “permitted material”, which will be used in new subsection (6A) of section 3 of the Human Tissue Act 2004 as a result of Amendments 1 to 3. The definition has the effect that the new provision about deemed consent will not apply in relation to relevant material of a type specified in regulations made by the Secretary of State. “Relevant material” is defined in section 53 of the Human Tissue Act 2004.

Amendment 5, in clause 1, page 2, line 11, after “of” insert

“the definition of ‘excepted adult’ in”.

This amendment is consequential on Amendment 4.

Clause 1 stand part.

Amendment 6, in clause 2, page 2, line 36, at end insert—

“( ) In section 52 (orders and regulations), in subsection (3) (statutory instruments to which negative procedure does not apply), after ‘1(11),’ insert ‘3(9),’.

( ) In section 52, in subsection (4) (statutory instruments to which affirmative procedure applies), after ‘no regulations under section’ insert ‘3(9),’.

( ) In section 52, in the list in subsection (10) (requirement to consult), after ‘section 1(11)’ insert—

‘section 3(9);’”.

This amendment is consequential on Amendment 4 and produces the result that the regulation-making power conferred by the provision inserted by that amendment will be subject to the affirmative procedure in Parliament and to a requirement to consult such persons as the Secretary of State considers appropriate before the power is exercised.

Clause 2 stand part.

Clause 3 stand part.

Amendment 7, title, line 1, leave out from beginning to end of line and insert

“Make amendments of the Human Tissue Act 2004 concerning consent to activities done for the purpose of”.

This amendment replaces much of the existing long title so as to introduce reference to the making of amendments of the Human Tissue Act 2004.

[Mr Robinson]

I am pleased to be serving under your chairmanship, Mr Wilson, as I am sure the whole Committee is. I think the sensible grouping of the amendments within the clauses will allow a natural flow, and yet if anybody among the very committed members of the Committee wishes to speak they will have an opportunity too. The idea is that it should not be a long Committee. We had a very good debate on Second Reading and we had the money resolution last night. The support for the Bill at those debates made it clear that the whole House now wants to see the Bill made law and for that reason we want to make progress as fast as we can.

Amendment 1 replaces the word “relevant” with the word “permitted” in clause 1, line 16, as the Human Tissue Act 2004 creates a new term, not already defined, to ensure that deemed consent will apply only in respect of “permitted” material. It is unlikely that many members of the public appreciate the vast scope of organ and tissue transplantation. I hope that this amendment will build on the public’s trust in the system and avoid unnecessary distress to the friends and family of the deceased if the new arrangements were also to cover novel transplants. In the debate on the money resolution yesterday, we went to lengths to stress the need to keep public confidence, as people need to be clear about what is in the Bill; I have heard some rumours circulating already that were not helpful. I think amendment 1 provides a clear distinction and we will be able to define “novel transplant” elsewhere in the Bill.

Amendments 2 and 3 make consequential changes to clause 1, again replacing the word “relevant” with “permitted”. The three amendments create an important distinction between “permitted material” and “relevant material”, which enables novel forms of transplantation, such as of faces and limbs, to be exempt from deemed consent. That underlines the point about maintaining public confidence in what we are doing.

It is imperative that the amendments are made to the Bill to ensure that consent is considered to be in place only for organs and tissues that are in line with the public’s perception of donation. I am sure we all understand the need for that. The term “relevant material” is defined in section 53 of the Human Tissue Act 2004 and is applicable to other activities in the Act.

Amendment 4 provides the definition of “permitted material” that falls within the Bill. The amendment creates a power to make a statutory instrument to set out in detail which organs will be excluded from the new approach. There can be no doubt where we stand—what is included and excluded—and that is all necessary for the public’s reassurance. I am sure we all agree that this should be established by a statutory instrument subject to the affirmative procedure, which by its very nature extends to the proposed list, or any additions or changes to it, rigorous debate and a vote if necessary.

Amendment 5 is consequential on amendment 4 and provides clarification that the provision set out in section 10 of the Human Tissue Act 2004 refers only to excepted adults. It is quite clearly defined in the legislation. Amendment 6 provides that the SI set out in amendment 4, on novel transplants and innovations to be excluded from the new approach to organ donation, will be subject to the affirmative procedure.

I think that covers quite a chunk of the Bill. I invite the Minister to comment on the last part of it. It would be a very happy responsibility.

[Peter Heaton-Jones (North Devon) (Con)]

It is a pleasure to serve on this Committee. I start by paying unequivocal tribute to the hon. Member for Coventry North West for his stewardship of the Bill. There are many others who have played a significant role in getting us to this stage, and it is testimony to the fact that the Bill has received literally all-party support that the names of signatories from all seven parties represented in the Chamber appear on this private Member’s Bill. The fact that the Front-Bench teams of both Her Majesty’s Opposition and the Government support it is extremely significant. It shows the widespread support, and how important the measure is. It is truly a cross-party endeavour.

I share the hope that has been expressed that Committee stage will not take long, because there is such unanimous agreement. I will briefly share a story that I had the privilege of telling when we debated the Bill in the Chamber back in February, because it is very significant. I recognise that doing so will perhaps bring back some difficult memories for those involved, but I hope it will be inspiring. It is the story of Keira Ball.

Keira and her family were involved in an accident on 30 July last year. There was a road traffic collision on the A361, the North Devon link road in my constituency, only about five miles from my home. Sadly, despite the best efforts of the emergency services and paramedics, young Keira passed away two days after the accident. Her mother and brother were very seriously injured, leaving her father to take on his own the agonising decision that he wanted his daughter’s death to give life to other people, and therefore that young Keira’s organs should be donated. In that inspirational moment, Keira’s parents, Joe and Loanna Ball, have given hope to so many more people. They have also given life to the Bill and seen it get as far as it has. I hope it will proceed without much further ado.

Four people are alive today because of the decision taken by Keira Ball’s father after that accident. Keira donated her kidneys, heart, liver and pancreas. One of her kidneys was given to a man in his 30s, who had been on the waiting list for two and a half years. The other kidney was given to a woman in her 50s, who had been on the waiting list for nine and a half years, and a young boy received Keira’s pancreas and liver. Keira’s heart was given to a 10-year-old boy, who in many ways, has become the figurehead of the excellent campaign. I speak of course of Max Johnson, who is alive today because of the brave decision made by Keira’s father in the aftermath of that awful accident. This is, in many ways, Max’s law and Keira’s law.

Those two young people are an absolute inspiration and show why this excellent Bill, which I hope will become legislation before long, will genuinely help to save lives. For that reason, I am delighted to be serving on the Committee and to be a part of this excellent Bill’s truly cross-party support. I hope that we can move forward so that it reaches the statute book, because if there is one important job that we should be doing in this place, it is saving lives, and that is what the Bill does.

--- Later in debate ---

[Jackie Doyle-Price]

The hon. Gentleman makes a good point. One of the difficulties in making legislation such as this, where things are put very clearly on the statute book, is that we must have regard to what really happens at the bedside. It is one thing for something to be written in law, but how do relatives losing a loved one in the most atrocious circumstances deal with this? It comes back to a cultural change. The most important thing any of us can do if we want to increase organ donation is ensure that we all have those conversations with our families, so that they understand our wishes. Let us put ourselves in the position of being at the bedside of a loved one who is losing their life. We can put all the support in place—specialist nurses to talk them through the process and so on—but unless families really understand their loved one’s wishes and have had that conversation, naturally the next of kin will be reticent to give consent. One of the great virtues of the Bill and the surrounding campaigns is that we have encouraged people to have those conversations. It has been a real driver of cultural change in that sense.

The hon. Member for Strangford also shared his experience, for which I am grateful, and reiterated that no one would be compelled. Finally, my right hon. Friend the Member for Chesham and Amersham was, as always, wise in her observation that, when the facts change, people should change their minds. It is not a weakness if politicians do so from time to time. I am grateful to all Committee members for their support.

The amendments constitute a tidying-up exercise that essentially make it clear that we are talking about organ transplantation. Their effect would be to remove novel transplants—such as hand and uterine transplants—from the scope of the Bill. The medical advances that allow such transplants are amazing, but in order that the law keeps pace with those developments, we need to make those exemptions and state that we really are only talking about organs. Amendment 7 amends the long title of the Bill to better describe what the Bill will do.

Most points around the Bill have already been made, but I will touch on some of the procedural issues that will flow from it. We expect a rise in the number of organ transplants as a consequence of this legislation, because more organs will be available. We could estimate that, and it could be anything from one to 700, but even one extra life is enough for me. However, I am confident that it will be much more than that. We will also have to put in place the register and the mechanics around it and publicise the changes. Following the Bill’s passage to becoming an Act—touch wood—we are looking at an implementation period of a year before everything is completely nailed down, enshrined and operational.

There has been lots of talk about the role of families. Ultimately, families will clearly wish to have a role in the welfare of a person who lacks the capacity to make a decision after deciding to be a donor. We need a system that takes families with us on this. We are sensitive to people’s faiths and beliefs, and that will all be considered as part of the wraparound care that we will put in place. We will obviously undertake further discussions with the Welsh Government to see how far we can learn from their experiences. By the time the Bill’s passage is complete, we will essentially have the same legal structure across Wales, England and Scotland.

I have talked about novel transplants, and clearly we will have the power to alter the regulations if other kinds of transplantation become possible over time. This legal framework should therefore be future-proof and able to react to changes in medical practice.

The hon. Gentleman ably spoke to the amendments. I do not have much more to say, other than that this is an extremely valuable piece of legislation. As a Health Minister, I have been given a wonderful tool to help us to save lives. It has been an absolute pleasure to work with all Committee members and to achieve this change one way or another. I look forward to seeing the Bill on the statute book. Everybody here, who has fought so much for these measures, can be extremely proud.

[Mr Robinson]

So many generous words have been extended in my direction that I feel that some redressing of the balance is necessary. I was lucky, and I hope I chose my Bill well. Judging by the support we have had through all its stages, it seems as though there is a groundswell of approval, opinion and acclamation for it, but one thing must not be overlooked, and that is that the Bill would have been very difficult if not impossible but for the support of the Government, including the Prime Minister in person. Throughout this, she has stuck to what she said in Liverpool.

I must also say that there have been tight moments, awkward moments, but the presence of the Minister with responsibility for the Bill, who is with us today, has throughout been one of charm—a smoother who, with her grace, has been able to get us through those moments too. She said it had been a pleasure to work with the Health Committee and it has indeed, and it has been a great pleasure to work with the Minister.

We keep saying these things, but perhaps we should cut down on further compliments to each other until we get the Bill through the Lords. On that basis, we are all in this together and still working hard, because we are not there yet, and who knows what the Lords will throw at us—

[Jim Shannon]

It is the first half.

[Mr Robinson]

I think that a little restraint would be a good thing. Thank you very much indeed, Mr Wilson, as always, and the Clerks. I have received excellent briefings—models of clarity—and I advise hon. Members to take a set now, in case they are challenged by any questions in their constituency work or anything like that. The briefings deal clearly with a lot of the most difficult issues. Again, Mr Wilson, it is a pleasure to serve under you. Thank you.

Amendment 1 agreed to.

Amendments made: 2, in clause 1, page 1, line 19, leave out “relevant” and insert “permitted”.

See the explanatory statement for Amendment 1.

Amendment 3, in clause 1, page 1, line 20, leave out “relevant” and insert “permitted”.

See the explanatory statement for Amendment 1.

Amendment 4, in clause 1, page 2, line 10, at end insert—

“‘permitted material’ means relevant material other than relevant material of a type specified in regulations made by the Secretary of State.”

This amendment defines “permitted material”, which will be used in new subsection (6A) of section 3 of the Human Tissue Act 2004 as a result of Amendments 1 to 3. The definition has the effect that the new provision about deemed consent will not apply in relation to relevant material of a type specified in regulations made by the Secretary of State. “Relevant material” is defined in section 53 of the Human Tissue Act 2004.

Amendment 5, in clause 1, page 2, line 11, after “of” insert “the definition of ‘excepted adult’ in”.— (Mr Geoffrey Robinson.)

This amendment is consequential on Amendment 4.

Clause 1, as amended, ordered to stand part of the Bill.

Clause 2

Consequential amendments

Amendment made: 6, in clause 2, page 2, line 36, at end insert—

“( ) In section 52 (orders and regulations), in subsection (3) (statutory instruments to which negative procedure does not apply), after ‘1(11),’ insert ‘3(9),’.

( ) In section 52, in subsection (4) (statutory instruments to which affirmative procedure applies), after ‘no regulations under section’ insert ‘3(9),’.

( ) In section 52, in the list in subsection (10) (requirement to consult), after ‘section 1(11)’ insert ‘section 3(9);’”.— (Mr Geoffrey Robinson.)

This amendment is consequential on Amendment 4 and produces the result that the regulation-making power conferred by the provision inserted by that amendment will be subject to the affirmative procedure in Parliament and to a requirement to consult such persons as the Secretary of State considers appropriate before the power is exercised.

Clause 2, as amended, ordered to stand part of the Bill.

Clause 3 ordered to stand part of the Bill.

Title

Amendment made: 7, in title, line 1, leave out from beginning to end of line and insert—

“Make amendments of the Human Tissue Act 2004 concerning consent to activities done for the purpose of”. —(Mr Geoffrey Robinson.)

This amendment replaces much of the existing long title so as to introduce reference to the making of amendments of the Human Tissue Act 2004.

Bill, as amended, to be reported.