Section 3 — Use of part of body of deceased person for transplantation, research etc

Human Tissue (Scotland) Bill: Stage 3 – in the Scottish Parliament at 9:16 am on 2nd February 2006.

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Photo of Trish Godman Trish Godman Labour 9:16 am, 2nd February 2006

Group 1 is on presumed consent of adults for transplantation. Amendment 11, in the name of John Farquhar Munro, is grouped with a number of amendments that are shown on the groupings list, which also shows the amendments that are subject to pre-emption. If members consult the list, that will save me from having to read them all out.

Photo of John Farquhar Munro John Farquhar Munro Liberal Democrat

I hope that the debate will be useful and effective.

In the United Kingdom, on average one person who is waiting for an organ transplant dies every day. Between April 2004 and March 2005, 52 Scots who were awaiting transplants died. Many others did not even make it on to the list before they died. The many people who have family members or close relatives who are waiting for transplants know the trauma that that causes. In the past 10 years, although the number of people who are waiting for organs has increased, the number of organs that are available for donation has fallen. The resultant gap must be addressed.

The main reason why I have lodged amendments that promote presumed consent is that although I welcome the Scottish Executive's efforts to bridge the gap between organ donation and demand, its proposals alone will not increase the rate of organ donation, which presumed consent would do.

Figures show, and statistics demonstrate, that opt-out systems increase donation levels. Spain has the highest organ donation rate of any country: its opt-out system has led to a rate of 33 cadaveric organ donations per million population. The question is this: does Scotland aspire to reach that level or Denmark's level, which has less than half the number of donations per million population and which operates an opt-in system that is similar to that which the Scottish Executive proposes?

Repeated surveys indicate that 90 per cent of people in this country support organ donation, but only 21 per cent of people carry organ donation cards, which is surprising. Ninety per cent support the concept, but only 21 per cent carry cards to confirm their wishes. That indicates to me that, although the Scottish Executive's proposals will codify existing laws and perhaps make the work of transplant units easier, the core pool of people who wish to donate will remain limited to the 21 per cent of people who carry donor cards.

Unsurprisingly, when individual wishes are unknown and recently bereaved relatives are asked to decide whether to allow organ donation, many opt for the default position, which is not to donate. As a result, about 40 per cent of relatives refuse to give their consent. However, if they are asked the question again after a month, they say that the regret their decision.

Whatever the result of the votes on my amendments in the group, it is important that the Executive encourage people to discuss organ donation with their families. The adoption of a system of presumed consent would address that by making it easier for people to achieve their wish to donate, given the exceptionally high level of support for donation, and is therefore entirely in line with the principles of the bill. Also, the adoption of a system of presumed consent will increase the number of donations by the simple means of increasing the number of donors in the donor pool. Figures undoubtedly show a positive correlation between presumed consent and higher rates of organ donation. However, the stark fact remains that, even if we take the glowing example of Spain, only 33 bodies per million population there are suitable for donation.

At the very least, whatever the method of organ donation Scotland will have at the end of today, the Executive must at least aspire to a level of donation that is the same as, or greater than, that of Spain.

I move amendment 11.

Photo of Stewart Maxwell Stewart Maxwell Scottish National Party

John Farquhar Munro ably explained his reasons for lodging the amendments in the group and why it is vital that members support them. I, for one, support them.

The debate on amendment 11 and John Farquhar Munro's other amendments in the group is not about a small change to the law, a technical issue or an administrative change to an organisation; it is literally a debate on a subject that is a matter of life and death for many of our fellow Scots. As John said, 52 people died last year while they were waiting for transplant organs.

Recent estimates show that, if presumed consent were to be included in the bill, approximately 29 extra donations would be made. That figure does not mean that 29 people would be saved, but that 29 people would get a heart transplant, 29 more would get a liver transplant and another 58 would get kidney transplants. In total, 116 people would be saved if presumed consent were introduced. In addition to the 116 people who would be saved, another 58 people would be lifted out of blindness. We are talking not only about saving lives; many people need cornea transplants that will give them sight again.

The debate on John Farquhar Munro's amendments is extremely important. As he said, although 90 per cent of people in this country support organ transplantation, very few carry a card. I carry a card and I know that many other members of the Scottish Parliament also do, but many people do not.

Importantly, the debate is not about the removal of anyone's rights. If we were to have a system of presumed consent, a person would have the absolute right to say that they do not wish their body to be used after their death—that right is absolute; it cannot be taken away. Instead, we are talking about granting rights to people who are waiting desperately on transplant lists.

To this day I have never understood why other people should get the final say about what happens to me on my death. If I die and my expressed wish is that my body be used for transplant, why can others override my wish? I do not think that other people—whether my wife, mother, father, daughter or my nearest and dearest friends—should have the final say about what happens to me; I should have the final say. At the point of my death I want my body to be used, if it is at all possible, to help others. That is the right thing to do. By introducing presumed consent we could achieve that; we could give life to many people.

I urge members to look not to their party whips—I hope that they have not been whipped on this issue—but to their consciences, and to consider whether to introduce presumed consent would be the right thing to do for our fellow Scots. I ask members to support John Farquhar Munro's amendments.

Photo of Dennis Canavan Dennis Canavan Independent

I support John Farquhar Munro's amendments for the simple reason that they would help to save lives. I am sure that we can all think of at least one friend or relative who has died waiting for an organ transplant that never came. Statistics suggest that every week someone in Scotland dies while waiting for a transplant and others die without even getting on to the waiting list. Nevertheless, many deceased persons' organs, which could have been used to save lives, are buried or cremated because the deceased person never got round to signing up to the organ donor register or to informing their relatives of their wishes.

It would be wrong to assume that all the people who are not on the register object to organ donation. Opinion polls suggest that about 90 per cent of the population would be willing to donate their organs for transplant, but only 21 per cent are on the register. If a system of presumed consent were to replace the status quo of presumed objection, there would be a greater likelihood of granting the wishes of deceased persons.

What about the wishes of the relatives? John Farquhar Munro's amendments would ensure that if the nearest relative objected and the deceased person had not opted in, the removal of organs for transplant could not go ahead. In such situations, the wishes of the relatives would be taken into account.

Evidence from other countries suggests that a system of presumed consent increases the rate of organ donation. Belgium and the Czech Republic have a system that is similar to what John Farquhar Munro proposes and they both have donation rates of more than 20 per million population, compared with only 12.3 per million population in the United Kingdom. That suggests that the amendments could lead to an increase of more than 60 per cent in the donation rate.

The Westminster Parliament failed to introduce a system of presumed consent in the Human Tissue Act 2004. The bill that is before us fails similarly, although public opinion is already moving towards support for presumed consent. A few years ago, there was only minority support for that position, but last year a survey that was conducted on behalf of the BBC indicated 60 per cent support.

Parliament has a great opportunity to show a lead not just to the people of Scotland but to people throughout the UK. By agreeing to the amendments, Parliament would lead public opinion, set an example to other parts of the UK and save lives, while respecting the wishes of people who have lost loved ones. I urge members to support the amendments.

Photo of Mike Rumbles Mike Rumbles Liberal Democrat 9:30 am, 2nd February 2006

In introducing his amendments, John Farquhar Munro set out well why the bill is before us, which is to save lives by increasing organ donations. Last year, 52 people died because there were not enough organ donations and 700 people are still on the waiting list for donations.

In Scotland we are doing slightly better than the rest of the UK. Statistics that have just been published show that 21 per cent of people in the UK carry an organ donation card, as John Farquhar Munro and Stewart Maxwell said, but in Scotland the figure is nearer 25 per cent. The card is completely worthless, because it has no legal standing whatever. The card has no force in law, which is why the Executive introduced the bill; it wants to ensure that the card has legal effect. We had a little bit of to-doing at stage 2, but I am delighted that the Executive has ensured that the 25 per cent of Scots who carry cards and are on the register will have their wishes legally enforced as soon as the bill is passed.

Stewart Maxwell said that no one has the right to overrule his wishes. That is correct. The bill is all about authorisation, which the amendments fail to recognise. The whole basis of our national health service is informed consent, not presumed consent. In other words, it is not a case of doctor knows best or the state knows best.

I refer to some of the evidence that the Health Committee received; I wish that some members had turned up to listen to it. According to Dr MacKellar of the Scottish Council on Human Bioethics, the system of presumed consent, which John Farquhar Munro advocates, is supported only by the British Medical Association; none of the other medical organisations is in favour of it, because it would be a breach of the European convention on human rights and of bioethics. The argument that John Farquhar Munro, Stewart Maxwell, Dennis Canavan and others have made that an opt-out system would increase donations is wrong and flawed; it would not do so.

Photo of Mike Rumbles Mike Rumbles Liberal Democrat

If the member waits a minute I will let him in.

In evidence to the Health Committee, John Forsythe of the Scottish Transplant Group said that a few years ago the refusal rate—the rate of relatives refusing consent to transplant—was 30 per cent and that it has now increased to 46 per cent. He said that we can only guess why the rate had risen, but following events at Alder Hey children's hospital, Bristol royal infirmary and other places, there has been a slight loss of trust of those who deliver care among those who receive it. It is important that what we put in place does not damage that trust further.

In paragraph 133 of the Health Committee's stage 1 report we highlighted John Forsythe's comments. We said:

"there is little evidence from international experience that changing to a presumed consent system produces a major change in levels of donation. He indicated that colleagues in Spain, where an opt-out system is used, had advised him that what happens there is very similar to what is proposed in the Bill - that relatives are consulted to ascertain the views of the deceased."

That is what the bill is about.

John Farquhar Munro's amendments are well-meaning—their aim is to increase the level of donations. However, I believe, and all the evidence suggests, that they would not do so. If the amendments are agreed to, they would damage the campaign, in which so many of us throughout the chamber and the country have been involved for so many years. They would increase mistrust of the NHS and the state and they are not supported by any medical organisation other than the BMA.

Authorisation, as is provided for in the bill, is the right way to proceed. I am convinced that, coupled with a major advertising campaign, the bill—unamended by John Farquhar Munro's amendments—will be instrumental in saving lives. It is a very good bill and the 700 people who are waiting for organ donations will welcome it. I do not think that the amendments would help in any way.

Photo of Trish Godman Trish Godman Labour

Another three members wish to be called. They have two minutes each.

Photo of Nanette Milne Nanette Milne Conservative

I will be brief. The provision to ensure that once authorisation is in place relatives cannot overturn it after the death of the potential donor will strengthen the present opt-in system. It will, coupled with on-going promotion and support of transplantation, ensure an increased number of donors. None of us disagrees that we need more donors.

I point out to John Farquhar Munro and others who have cited the example of Spain that there, the most important factor in identifying donors is not considered to be the opt-out system but the fact that every hospital in Spain has someone with the responsibility for ensuring that, when a person dies, their relatives are approached with a view to the deceased's organs being donated. That is the significant factor, not whether we have an opt-in or an opt-out system.

Photo of Janis Hughes Janis Hughes Labour

I am well aware of John Farquhar Munro's interest in this area, which is similar to mine and that of others, including my colleague, Margaret Jamieson, who has previously debated the matter in the chamber.

This is an emotive issue and I have much sympathy for the arguments that have been expressed. I believe that the bill, in the form in which it has been presented to Parliament, and the information that the Executive has committed to issue as part of the legislative process, will make a huge difference and will highlight the issues surrounding organ donation and transplantation.

I am aware of the systems in other countries, such as Spain, which John Farquhar Munro mentioned. There are various systems in various countries—I do not know which, if any, would be right for Scotland. There are soft opt-out systems and hard opt-out systems. Which would be right for Scotland? We have not had that debate. We did not take evidence on that at length during stage 1 of the bill, but such an important issue deserves careful consideration. We know that some people are in favour of what John Farquhar Munro suggests and that some people are not. We have to ensure that we hear everyone's views and that the professionals who are involved share the view of those who wish to change the legislative position.

We must give the matter careful consideration and we should not deal with it in amendments at stage 3. I hope that we can return to the matter at some point. I will not support John Farquhar Munro's amendments today.

Photo of Shona Robison Shona Robison Scottish National Party

The vote on the amendments should be a free vote, because it is not a party-political issue; it is about the views of individuals. My personal view is that authorisation is the way to proceed because we must respect the wishes of deceased persons. There should be informed consent, not presumed consent.

The relatives of a deceased person who had not expressed a view about organ donation will be consulted. Mike Rumbles made the most important point in the debate so far when he said that the issue is about trust. Like it or not, after Alder Hey and other tragedies, the public have lost some of their trust in the system. That must be built up again; the bill will go some way towards achieving that. It has the potential to increase the level of organ donation, but that potential will be realised only if the bill is backed up by an effective public information campaign about organ donation.

That will be the key to the bill's success. I ask people to support the bill and to reject John Farquhar Munro's amendments.

Photo of Lewis Macdonald Lewis Macdonald Labour

As many members have said, the most important principle in the bill is the principle of authorisation. We have put that principle in place because we recognise that the existing system of passive consent to organ donation is no longer fit for purpose.

In modernising our human tissue legislation, we had a choice to make between a system that would replace passive consent with active authorisation, which is what the bill proposes, or a system which would presume consent on the part of people who do not object, which is what John Farquhar Munro's amendments would put in place. As Janis Hughes suggested, a time might come when it will be safe to presume consent on the part of people who have expressed no view. However, that time is not now.

In my view, a change that is as radical as a switch to a system of presumed consent for transplantation could be introduced only if there were clear evidence of strong public and professional support for it. Although many members might welcome such a move, the evidence simply does not exist. As Mike Rumbles, Nanette Milne and others said, one of the lessons from disclosures about retention of children's organs after post-mortem examination is that, for many people, presumed consent is not consent at all.

Many people are willing to donate organs and tissue after their death, but they want to have their say about what organs or tissue will be taken from their bodies and what that will be used for. That is why the fundamental premise of the bill is so important. The bill is based on the principle that people's wishes should be respected after their death. That means that it is for each person to make those wishes clear. If that has not happened, authorisation must be obtained from the people who were closest to that person in life and who are most likely to know his or her wishes. Without authorisation from the deceased or their nearest relative, transplantation cannot happen. On that basis, I hope that Stewart Maxwell will accept that what he says he wants will be delivered by the fundamental principles of the bill as it stands.

Under Mr Munro's amendments, the only wish that people would be able to record would be to prohibit the removal and use after death of their body parts for transplantation. Where there is no prohibition, the adult may be deemed to have authorised the removal and use of organs but only—as Dennis Canavan pointed out—after their nearest relative has also had the opportunity to object to donation going ahead.

There are a number of grounds on which the nearest relative can object to organ donation, despite the fact that the deceased person had not registered their objection to their organs being donated. One of those is that transplantation of the deceased adult's body parts would cause significant distress to the nearest relative or to the deceased person's partner, parent, child, brother or sister.

A clinician who was in urgent need of an organ would face a much harder task if Mr Munro's amendments were passed. Under the current system, which we wish to replace, he or she would have to seek the consent of the family of the deceased. Under the provisions in the bill, that onus on the clinician will no longer be required if a person has, before their death, authorised organ donation. The nearest relative would need to be consulted only if no such authorisation had been given. In that event, the nearest relative would be asked whether they knew the person's wishes and were prepared to authorise organ donation.

Under Mr Munro's amendments, the clinician would always have to contact the nearest relative unless a specific prohibition had been registered by the deceased. The nearest relative could then object on the basis of the distress to themselves or another person in the family that would be caused by the transplantation. In other words, there would be not fewer barriers to organ donation—which is John Farquhar Munro's intention—but new barriers to organ donation. In practice, if a person wanted to donate their body parts, that positive intention could be ignored and overruled by the nearest relative on the basis of the distress that might be caused to family members.

Photo of John Swinburne John Swinburne SSCUP

Will there be a national register of people who want to donate human parts after death?

Photo of Lewis Macdonald Lewis Macdonald Labour

That is precisely what the bill will do. It will place at the centre of the process the authorisation that has been granted by an individual, rather than an objection that might have been registered by that individual or another person, which is what would be required under a system involving presumed consent.

It has been said that about a quarter of the Scottish population have put their names on the NHS organ donor register. Under the bill, their organs will automatically be available for transplantation after death. Under John Farquhar Munro's amendments, nobody's body would be available in that sense; every case would have to be checked with the nearest relative by the clinician, unless a prohibition was in place.

The approach that the bill takes is the right one. It will increase the number of organ donations, honour the wishes of the deceased and bring up to date the basis on which relatives are approached.

This is a policy matter—it is not simply a matter of personal belief. I therefore urge John Farquhar Munro to seek to withdraw his amendments. If he will not do so, I urge Parliament to maintain the unanimity of support for the principle of active authorisation by rejecting his amendments.

Photo of John Farquhar Munro John Farquhar Munro Liberal Democrat 9:45 am, 2nd February 2006

The majority of opinion seems to be opposed to what I propose, which is disappointing.

I support the Executive's proposal in the bill. It is an excellent move and a big improvement on what we have at the moment. However, I introduced the concept of presumed consent to enhance and improve the bill. As a consequence, I would like to test the feeling of Parliament, so I propose that my amendment be voted on.

Photo of Trish Godman Trish Godman Labour

The question is, that amendment 11 be agreed to. Are we agreed?

Members:

No.

Photo of Trish Godman Trish Godman Labour

There will be a division. I suspend the meeting for five minutes.

Meeting suspended.

On resuming—

Division number 1

For: Baird, Shiona, Ballance, Chris, Ballard, Mark, Canavan, Dennis, Curran, Frances, Fabiani, Linda, Fox, Colin, Gibson, Rob, Grahame, Christine, Harvie, Patrick, Kane, Rosie, Leckie, Carolyn, Mather, Jim, Maxwell, Mr Stewart, Munro, John Farquhar, Ruskell, Mr Mark, Scott, Eleanor, Stevenson, Stewart
Against: Aitken, Bill, Arbuckle, Mr Andrew, Baillie, Jackie, Baker, Richard, Barrie, Scott, Boyack, Sarah, Brankin, Rhona, Brocklebank, Mr Ted, Brown, Robert, Brownlee, Derek, Butler, Bill, Chisholm, Malcolm, Craigie, Cathie, Crawford, Bruce, Cunningham, Roseanna, Curran, Ms Margaret, Davidson, Mr David, Deacon, Susan, Douglas-Hamilton, Lord James, Eadie, Helen, Ferguson, Patricia, Fergusson, Alex, Finnie, Ross, Gillon, Karen, Glen, Marlyn, Goldie, Miss Annabel, Gordon, Mr Charlie, Gorrie, Donald, Henry, Hugh, Home Robertson, John, Hughes, Janis, Jackson, Dr Sylvia, Jackson, Gordon, Jamieson, Cathy, Jamieson, Margaret, Johnstone, Alex, Kerr, Mr Andy, Lamont, Johann, Livingstone, Marilyn, Lochhead, Richard, Lyon, George, MacAskill, Mr Kenny, Macdonald, Lewis, Macintosh, Mr Kenneth, Maclean, Kate, Macmillan, Maureen, Martin, Paul, Matheson, Michael, May, Christine, McAveety, Mr Frank, McCabe, Mr Tom, McConnell, Mr Jack, McLetchie, David, McMahon, Michael, McNeil, Mr Duncan, McNeill, Pauline, McNulty, Des, Milne, Mrs Nanette, Mitchell, Margaret, Morgan, Alasdair, Morrison, Mr Alasdair, Muldoon, Bristow, Mulligan, Mrs Mary, Murray, Dr Elaine, Oldfather, Irene, Peacock, Peter, Peattie, Cathy, Pringle, Mike, Purvis, Jeremy, Radcliffe, Nora, Robison, Shona, Robson, Euan, Rumbles, Mike, Scanlon, Mary, Scott, Tavish, Smith, Elaine, Smith, Iain, Smith, Margaret, Stone, Mr Jamie, Sturgeon, Nicola, Swinburne, John, Tosh, Murray, Wallace, Mr Jim, Welsh, Mr Andrew, White, Ms Sandra, Whitefield, Karen, Wilson, Allan

Photo of Trish Godman Trish Godman Labour

The result of the division is: For 18, Against 87, Abstentions 0.

Amendment 11 disagreed to.