Human Tissue (Authorisation) (Scotland) Bill: Stage 1

In the Chamber: 26th February 2019
Human Tissue (Authorisation) (Scotland) Bill: Stage 1
David Stewart (closing speech): This has been an excellent debate, with well-informed and thoughtful contributions from across the chamber.
As we have heard from, I think, all members, this is crucial legislation. How do we raise the level of organ donations in Scotland to match the needs of those desperately awaiting transplantation? As we have heard, tragically, 426 patients died in the UK last year while on the transplant list or within one year of removal from it.
We have heard that Scotland has the highest percentage of people on the organ donor register in the UK but the lowest actual rate of organ donation per million people. The key issue is the gap between those who wish to donate organs and the number who go on to join the organ donor register. Around 80 per cent of people support donation but only 52 per cent have signed up to the register. In simplistic terms, the purpose of the bill is to bridge the divide—to encourage those who support organ donation but have not registered to have their wishes respected.
My friend Gary is in his mid-50s and lives in Glenrothes in Fife. Nearly two years ago, he was given the gift of life by a crucially needed heart transplant. Prior to that, he was on the transplant list for 12 months and had a pacemaker. He had been slowly deteriorating, and without the transplant he would have died. When I spoke to Gary at the weekend, he said that he could not praise enough the dedicated support of the medical and nursing staff at the Golden Jubilee national hospital. He said to me, “It was a matter of life or death.”
We know that international evidence and best practice are crucial elements of the principles underpinning the bill. We know from background research by the British Heart Foundation that people living in countries with a soft opt-out are 17 to 29 per cent more willing to donate their organs.
In general terms, a soft opt-out means that unless the deceased expressed a wish in life not to be an organ donor, consent will be assumed. As we heard from a number of speakers, of the top 10 countries in terms of donors per million, nine have an opt-out system. That brings us to Spain, on which I made a couple of interventions earlier. Spain leads the world league table for organ donations, and we took evidence at the Health and Sport Committee on why Spain is successful. There are three main reasons: it has comprehensive networks of transplant co-ordinators, a donor detection programme and greater provision of intensive care beds. Even if the UK family refusal rate was reduced to a level that was similar to that in Spain—from 40 per cent to 15 per cent—the UK donation rate would still be only half of that which Spain enjoys. Could the minister comment on that in his closing speech?
We should bear it in mind that, as this is not a zero-sum game, we must also concentrate on increasing the number of intensive care beds to allow for the increased numbers of organ donation patients who will require such care.
Although Labour will support the bill, it considers that some issues will be worth further discussion, such as the position of adults with incapacity, on which we heard from Keith Brown, and the variable age of children’s capacity to consent—it is 16 in Scotland and 18 in Wales—which was referred to by many members.
There are issues regarding the rights and obligations that affect decision making on organ donation. As we have heard—this is putting matters in simple terms—the three routes to a decision are opt-in, opt-out and deemed authorisation, which is a passive form of decision. However, as the minister will know, the Law Society of Scotland and others have raised legal questions about those routes, which he might wish to consider.
First, is deemed authorisation consistent with the Supreme Court’s ruling on informed consent in the case of Montgomery v Lanarkshire Health Board? Secondly—this issue is perhaps more important and I am sure that the minister will already have information from his advisers on it—is the bill consistent with the European convention on human rights, and specifically the case of Elberte v Latvia of 2015? For members who are not familiar with that case, tragically, Mrs Elberte’s husband died in a car crash, leaving no record of his wishes on organ donation. However, his tissues were used, and the court later ruled that that was a violation of article 8 of the ECHR. As the minister will know, the bill will have to be deemed consistent with the ECHR before it can gain the Presiding Officer’s approval. What assessment has there been of whether, in practice, medical professionals will take into account the wishes of a donor’s family, irrespective of the provisions of the bill? Should the law cover that? Will transplant units have the capacity to cope with the increase in donations that I mentioned earlier?
I am conscious of the time, so I will conclude by saying that Labour supports the general principles of the bill. However, we have also highlighted areas in which its provisions could be strengthened. I agree with Andrew Tickell of Glasgow Caledonian University, who said, in response to the Scottish Government’s consultation, that
“failure to put the rights of family members and duties of doctors on a statutory footing appears even more problematic”.
Therefore, I strongly suggest that the Scottish Government looks again at the question marks around the bill’s compliance with article 8 of the European convention on human rights.
Notwithstanding that, the bill is a vital piece of legislation that will improve Scotland’s position in the international league of organ donation and might mean the difference between life and death for the many Scots who are—like my friend Gary once was—desperately in need of life-saving organ donations. As Kahlil Gibran once said:
“You give but little when you give of your possessions. It is when you give of yourself that you truly give.”