Alastair Ross
East Antrim · Democratic Unionist Party · Northern Ireland
“Over the weekend, she supported an independent investigation into everything that is going on in the RHI scheme. She has been working with the Economy Minister to try to make sure that we have something in place in early January to stop the costs of the scheme and reduce the cost.”
“There is no doubt that it has been an incredibly difficult time over the past two weeks for anyone involved in politics. It is quite clear that the public are, quite rightly, angry about a scheme that, with hindsight, was poorly designed and badly administered.”
“I know that, for some individuals, the old habit of asking questions rather than trying to answer them, dies hard, but what we had was not an opposition-driven policy or an attempt to hold the Executive to account; it was a media-driven thing, and some of the opposition parties tried to jump on the bandwagon.”
“Again, I hear the leader of the Alliance Party chirping away in the background. I listened to her contribution, and she must have had 10 or 11 questions she wanted answered.”
“That is why some of the hyperbole that has been around today is hard to stomach. <BR /> <BR />What we heard from my colleague Joanne Bunting was a thoughtful and considered first contribution to the Assembly, and I think that it was one that shows that she will be a valuable asset to the Chamber.”
“They abandoned their seats, and they failed to discharge their duties or ask the questions that their voters might, quite rightly, want them to ask. The public care very little about procedures, points of order or Standing Orders.”
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Every one of 1,064 lines we hold for Alastair Ross, in date order, each linked to its source. Free to read, in full, without an account. Page 11 of 22.
“<BR /> <BR />I will finish by once again quoting Mrs Dobson speaking in a previous debate on promoting women in politics. She said:”
“It is my firm view that the Bill, and what it is trying to do, is unproven internationally, is potentially counterproductive and unnecessary, and, worst of all, moves us away from the well-established need for actual, informed and expressed consent before carrying out a medical procedure on an individual. The lack of consent that the Bill would legislate for makes me deeply uncomfortable and requires me to vote against its passage at Second Stage, because the principle of the Bill is about moving towards deemed consent. <BR /> <BR />I appeal to Members to detach themselves from the powerful emotional arguments we have heard previously in this debate and consider the fact that, by passing the Bill, a person would no longer need to give their consent for them to be considered in law as a willing organ donor.”
“I think that it is important that doctors can see the detail and that we should specifically ask them about how they feel about the proposed changes it the legal framework in which they would then be required to operate. <BR /> <BR />It is easy for people to dismiss concerns expressed about the Bill as being politically motivated, or simply say that the Bill is about saving lives and that anybody who opposes it is not interested in doing that. It is my firm view that the Bill will fundamentally shift the relationship between the state and the individual.”
“Given the very real concerns about it, and its impact on the ethical questions I have raised today, I would prefer to see work commissioned by the Department that would consult with clinicians directly impacted by the law in order to establish whether they would be comfortable working in this new legal framework before the Bill is enacted. <BR /> <BR />Members have referred to the consultation process that was carried out, but any consultation that has been carried out has been in absence of the Bill. It has been very difficult to get a draft copy of the Bill over the past number of years. We have talked about broad concepts but we have not seen the detail of it, so I think that consulting in the absence of the wording shows a shortcoming in the consultation process.”
“It requires the Department to include in the report, of which there will be at least one every five financial years, its opinion on whether the Act had been effective in promoting transplantation activities and any recommendations for amending the law so as to promote transplantation activities. I suggest that consideration should be given to making the interval under clause 14(3) three years rather than five. Then, should the Bill be passed and make little or no impact, it could be repealed within a fairly short period of time. <BR /> <BR />Clause 21 refers to commencement. It is important to note that the date of the commencement of the new system is proposed as 31 May 2018. This suggests that there would be a two-year period of preparation before implementing the Bill.”
“Again, I draw a parallel with the Mental Capacity Bill, where we received advice that the order of ranking makes no legal difference at all. That would be particularly concerning, especially given the point that my colleague, Mr Lyons, has just raised, that, if there was no legal difference in the ranking, then, potentially, a "friend of long standing" would be the first person who could be contacted. Given the difficulties that there would be in establishing exactly what that relationship is, how close that relationship is or what kind of knowledge that person had of the individual, I think it would cause some concern. <BR /> <BR />Clause 14 refers to an annual report on transplantation. Again, the Bill sensibly requires an annual report on transplantation to be introduced.”
“There are also questions about how a nurse or doctor in a trauma unit would determine how to establish who a "friend of long standing" is in order to contact them to ask them whether to proceed with an organ donation. That is an area that the Committee would undoubtedly want to investigate more thoroughly. I think that it is an odd phrase to see in a Bill. Even though the Member says that she will leave it to regulations, there would be huge difficulties in determining what a "friend of long standing" is. <BR /> <BR />I think it would be important to see whether, in that list of qualifying relationships, the ranking order could be made under the code of practice, as proposed in clause 10(4), rather than in statute. I question whether any legal weight is given to the order of ranking.”
“Yes, I have made the point about the difficulties created from a scrutiny point of view of leaving things to the code of practice. Indeed, Committees that I have sat on are continually having disputes with Departments about leaving things to codes of practice, bearing in mind that you cannot amend them; you can simply accept or reject them. I have not come across the notion of a friend of long standing in any other legislation. How would we ever determine what a friend of long standing is?”
“This clause is based on section 27 of the Human Tissue Act 2004, which sets out detailed instructions on how this should be interpreted. For instance, are those at the top of the list ranked higher than those at the bottom?”
“There is no further clarity on the person who can make this decision. Again, I draw a parallel with the Ad Hoc Committee and the questions that we raised on best interests. I fail to see how it can be judged to be in an individual's best interests to donate their organs without consenting. It would, of course, be in the recipient's best interests, but I think that Mrs Dobson may wish to explain to the House how it could be considered in the donor's best interests when consent has not been established. It is something that I was a little bit confused about when reading through the Bill. <BR /> <BR />Clause 10 talks about the qualifying relationships. It sets out the type of people who can provide express consent to organ donation.”
“However, there is no indication of the type of circumstances that may be considered applicable, as there is in clause 7(3), nor is there any explanation of why this might be in the individual's best interests. Most importantly, there is no safeguard on who can agree to such a donation. I am concerned that vulnerable adults who cannot consent should have the full safeguards of the law, and it is not clear that they do under this clause. I am not reassured by regulations made under a similar clause in the Welsh legislation, stating that the adult who lacks capacity:”
“The explanatory and financial memorandum says:”
“As I have mentioned on numerous occasions, members of the Ad Hoc Joint Committee on the Mental Capacity Bill will be well aware of the issues connected with the ability of children to give consent to medical operations. The lack of consistency in the approach by some members of that Committee today has not gone unnoticed. <BR /> <BR />Clause 8 deals with deemed consent in activities involving material from living adults who lack capacity to consent. It proposes how to deal with the consent of a person who has died but did not have the capacity to consent to the donation before death and requires a third party to provide consent for the person. Clause 8 allows the law to deem consent for such individuals while they are alive in circumstances of a kind specified by regulations made by the Department.”
“Clause 6 deals with express consent of children. I have some concerns around that and clause 7. Clause 6 allows children to expressly consent to donation of material covered under clause 2 while alive or after death as a child through their own consent, if considered capable of making such a decision as provided for in clause 18(3), or by appointing a representative. Clause 7 allows a child to expressly consent to transplants involving excluded material, to be defined in future regulations. Of course, leaving such matters to regulations is of concern from the scrutiny point of view. Organ donation by children is a controversial subject that needs much further discussion. In particular, how will a child be judged competent to give consent and understand exactly what it is they are consenting to?”
“If they return to Northern Ireland and, sadly, pass away, are they to be considered ordinarily resident in Northern Ireland and therefore deemed to have consented, as provided for in this Bill? Similarly, a member of the armed forces may be in a foreign military base for most of the year but resident in Northern Ireland. I seek clarity on how they are to be dealt with under this legislation.”
“However, it is not clear how the law would treat individuals such as international students and armed forces personnel. At present, around 8% or 9% of students at Queen's University are international students. Most students at Queen's take degrees that last three or more years, so an example would be, if we had a Malaysian student at Queen's taking civil engineering, he or she will be in Northern Ireland for a period of three years for the degree but is unlikely to be there continuously for those three years. During the summer break, the student may decide to return to Malaysia before returning to Queen's for the autumn term.”
“their consent cannot be deemed. The same goes for individuals who are judged to have:”
“In other Bills, we have consistently said that such important issues should be in the Bill, not left to codes of practice. That is something that the Committee may also want to look at. <BR /> <BR />Clause 5 is about express consent. The Bill proposes to follow the example of the Welsh legislation regarding "excepted adults" by stating that, if an individual dies:”
“It is a matter of debate, and the Committee may wish to consider whether the amount of money spent on servicing the system would be better spent on the public awareness campaign and whether that could have a greater benefit to promoting organ donation in Northern Ireland. <BR /> <BR />I also have questions around what is considered "reasonable", as is stated in clause 4 where it talks about contacting those who are in a qualifying relationship. Again, what is a reasonable thing for clinicians to do is something that we have looked at with the Mental Capacity Bill, and we need some certainty on that. One of the other areas that I have concern around with the clause is that so much information is to be left to codes of practice.”
“Of course, the work of Professor John Fabre will be of great value to the Committee in determining whether clause 4 is beneficial. <BR /> <BR />I made the point that many countries across Europe and, indeed, the world operate an opt-out system, including Estonia, Austria, Slovenia, Norway, Italy, the Czech Republic, Finland, Latvia, Sweden, Poland, Switzerland, Slovakia, Luxembourg, Greece and Cyprus, all of which have a poorer record of organ donation than we have. I am not necessarily saying that introducing the legislation will result in a poorer rate of organ donation, but I do make the point that there is no clear evidence that an opt-out system is a driving factor in promoting organ donation. <BR /> <BR />The clause will also require quite a significant amount of investment to be made.”
“Those are not my comments but those of Dr Peter Matthew. A number of Assembly Members in Wales noted that they had received many letters from constituents who had made a decision to take their name off the organ donor register when the legislation was going through the National Assembly. Again, it is very much the case that members of the public are perhaps not fully aware of what "deemed consent" means. I am concerned that, until there has been a full review of clinicians and the public, we should not have the confidence to say that they do. <BR /> <BR />The clause also assumes that a change is needed, when the percentage of the population registered as donors has consistently risen since 2008. That is a point that I have previously made.”
“I noticed that, on a similar clause in the Welsh Bill, Dr Peter Matthew, who is a consultant in intensive care in Swansea, said to the Health and Social Care Committee:”
“As I have said already this afternoon, my fundamental objection to the clause is based on the ethics of changing to that type of system. It would, in my view, see the state going beyond its rightful place. Deemed consent is, in my view, not consent at all, and, in an area as sensitive as what happens to your body when you die, it should be the case that affirmative assent is required or at least sought. I find it somewhat concerning that other Members do not seem to be so concerned about moving away from a system that requires actual consent to one that does not. <BR /> <BR />It is also important to note in clause 4 the potential for a backlash if citizens believe that the idea of organ donation as a gift is eroded if deemed consent is introduced.”
“This is also the part of the Bill that clinicians in emergency medicine and renal units have expressed concern over.”
“It would be helpful if that document was made publicly available to allow us to examine the figures outlined and to understand some of the assumptions within that calculation. For instance, do the figures include the cost of IT systems, assumptions on how many organs will stay in Northern Ireland, and what variance has been taken into account should assumptions change in the values assigned to the quality of life index? All those were factors considered by the Welsh Assembly when considering similar legislation a few years ago. <BR /> <BR />Clause 4, the most controversial aspect of the Bill, around deemed consent, requires incredibly close and careful scrutiny. As I said, it is interesting that the BMA, which had supported Mrs Dobson in her efforts to introduce a soft opt-out system, has expressed concerns around how it has been drafted.”
“<BR /> <BR />Another point mentioned by a few Members, and it is not the primary point but it is a significant point, is the costs associated with the Bill. The potential cost of the duty to promote is not mentioned; it is described in the explanatory and financial memorandum (EFM) as "limited". The bigger cost is implementing the new system of donations. The EFM provides some detail on that. According to a research paper produced by RaISe in November 2013, which does not appear to be publicly available, the:”
“We should ensure that the Department of Health would have a much more sustained information campaign than simply sending out a press release. <BR /> <BR />Should the House pass the Bill, it is my belief that every citizen who is by law considered a willing organ donor by virtue of deemed consent should be made aware, at least once a year, that they are on the list, if we are to avoid confusion and potential difficulties in the event of death. My preference is that we do not have a deemed consent system, but if it is the will of the House that we should, it is important that on an annual basis every citizen is made aware that they are on that list and told how to opt out if that is their preference.”
“Whilst that seems to be a sensible approach, the Bill is not clear on what constitutes "a campaign". It could range from as little as sending out a departmental press release to local newspapers to as much as a broadcast advertising campaign. If the legislation does proceed, the Committee will want more clarity around that. <BR /> <BR />We could draw a parallel with section 15 of the Human Trafficking and Exploitation Act, when the Department of Justice just sent out a press release, believing that it had thereby met its obligations to alert the public to a change in the law. While some Members may argue that that is a less important issue, it is relevant to look at what the Department of Justice thought was adequate to be a campaign.”
“Some may argue that that is moralistic or paternalistic rather than raising awareness to allow people to make their choice. The Committee may wish to consider that. <BR /> <BR />The Bill is not clear on what the role of relatives and friends in affirming deemed consent should be. In a letter to MLAs today, the BMA recorded concerns around that as well. It could be difficult for the Department to be clear with the public as to the role of their friends and relatives. As I said, the last thing that we need in regard to the sensitive issue of organ donation at the end of life is in any way to create confusion. <BR /> <BR />Clause 1(2) states that the Department will be under:”
“with regard to the proposal to introduce deemed consent. The objective in that clause should not be controversial. It is hard to see a downside in the Department being required to promote awareness of transplantation, particularly given that it already does some of that work, and the PHA is already doing that work in Northern Ireland. If a presumed consent system is introduced in Northern Ireland, it will certainly need to be advertised and allow individuals to make an informed decision with regard to their organs. <BR /> <BR />However, issues do arise from the wording of clause 1. It may seem like a minor point, but there is difficulty around the Department promoting transplantation rather than simply awareness of transplantation.”
“Leaving aside the issue of friends, which I will return to, I would say that, generally speaking, most people will see that clause as being uncontroversial. <BR /> <BR />The Department will also be required:”
“That is why I come to the view that we do not need legislation in this area at all and that there are other things that we could do to improve the situation in Northern Ireland. <BR /> <BR />As I have already acknowledged, whether I support it or not, the Bill will in all likelihood attract the support of the House at Second Stage and move on to Committee Stage. If it does move into Committee Stage, there are a number of areas in the Bill that I think the Committee would need to look at quite closely. I want to detail some of them. <BR /> <BR />Clause 1, "Duty to promote transplantation", places a duty on the Department to:”
“I acknowledge that she has ensured that there are certain safeguards in it, but, as I said earlier, it misses the point to some degree, because, irrespective of the safeguards in it, the Bill deems that every adult in Northern Ireland has given their consent without ever asking them. That is the area that I have major contention with. If 90% of people in Northern Ireland, or across the United Kingdom as a whole, support organ donation, it should not be too difficult a task for us to increase organ donation numbers. A failure to do so may, in fact, prove to be a lack of effort. I mentioned earlier the success that the Department and the PHA have had in recent years in increasing public awareness and boosting the number of people who have voluntarily signed up to the organ donor register.”
“As the Member will acknowledge, every Bill is drafted differently. We need to ensure that anything that we draft and pass in the Assembly is compliant. We need to satisfy ourselves of that. I am aware that some eminent lawyers suggested that the Welsh legislation could be open to successful legal challenge. In the end, the Welsh Government decided to ignore that advice, but I am aware that that advice was given. I suppose that, ultimately, until these things are challenged in the courts, we will not know. <BR /> <BR />The proposer of the Bill also talked about safeguards being built into the Bill.”
“I do not want to labour the point, but certain religions do not believe that organ donation is in keeping with their beliefs. How does the proposer of the Bill intend to allay concerns about cultural and religious sensitivities? Of course, the Human Rights Act allows a person to practise their religion, so would the Bill potentially cause a difficulty with the Human Rights Act? Would article 8 be invoked? Again, I ask the mover whether she is satisfied that the Bill would not be open to successful legal challenge on those grounds.”
“<BR /> <BR />Katherine Murphy, director of the Patients Association, said that it is not a decision that the Government can make on behalf of people. Further ethical difficulties arise when we consider other issues. I talked about people who may lack capacity to make decisions, and I point to the Mental Capacity Bill and the deliberations that we have had in that forum. Will they be supported to make a decision, and will they be asked their view? Can they withdraw consent at a later stage? Other questions have been asked before, such as: how can a child give their consent? Do they have the maturity or the capacity to give consent to organ donation? <BR /> <BR />An opt-out system is also impractical in an increasingly multicultural society because cultural and religious objections to organ donation are also important.”
“I am also an unapologetic supporter of limited government and hold the view that the state should not get involved in every aspect of our lives. It could be argued that the Bill effectively — I listened to Mrs Cameron's contribution earlier — gives ownership of our organs to the state unless we specifically register to object. Even if people dismiss that argument, what cannot be dismissed is that, through the Bill, the 108 Assembly Members will decide that someone living in Northern Ireland has given their consent to donate their organs. I do not think that I, or any other Member, should consider it morally or ethically right that we take that decision for people. Many patient groups across the United Kingdom have also expressed their opposition to deemed consent on those same grounds.”
“As I said earlier to Mrs Dobson, although donor cards can be overruled by a family, they at least prove that the individual made a positive act during their lifetime to express consent, and they give families comfort in that they know what the wishes of their loved ones were.”
“In my view, we are moving away from relative certainty where an individual gives informed consent during their lives, which guides families and doctors when making difficult decisions on whether to donate, to a system of uncertainty, where families and medical professionals cannot be sure.”
“I have spoken to doctors, and if you appear at an accident and emergency ward and you are unconscious, if a doctor takes the decision to operate on you when you are unconscious and cannot get the consent to do so, they are not presuming that they have your consent to operate, but they are acting in your best interests. It may seem like a minor point, but, in legal terms, there is a significant difference in the two positions. <BR /> <BR />My view is that organ donation should be authorised by the individual whose organs are donated. The Bill allows you to withdraw consent, but it does not appear to allow you to authorise it.”
“The General Medical Council also rightly focused on the importance of individuals giving their informed consent. In this proposed Bill, that autonomy of an individual to give informed consent is removed, because consent is deemed. At present, the Human Tissue Act 2004 is the law governing much of organ donation in the UK, and the Act makes consent the focus point of deliberation, but this Bill moves away from the focus on consent, as consent will be presumed or deemed. I asked earlier if there was any other area of medicine in which consent would be presumed. Even when it comes to saving someone's life, doctors will act in a patient's best interests, but they do not presume the consent to do so. That is an important acknowledgement to make.”
“Even with the fact that a family could veto any donation proceeding, the fact that the Bill would presume consent in the first place is deeply worrying for me, and I know that it is deeply worrying for many medical professionals working in Northern Ireland. In particular, I note comments from Dr Peter Saunders, who is a former general surgeon. He said of deemed consent systems for organ donation:”
“There are those bioethicists who argue that the concept of deemed consent is, in itself, a violation of a person's autonomy as it forces patients to either become donors or state their wish not to become donors. In both instances, a patient's autonomy is violated, as they argue that compelling patients is, in itself, unethical. <BR /> <BR />I would much prefer to see us create a system where it is easier for people to choose to make a choice, but not making any declaration at all cannot be considered as a choice. I hope that nobody wants to see the case where organs are being donated by default because an individual did not take the time to opt out or was not aware of the law.”
“I repeat again that deemed consent, as is proposed in the Bill, can never be considered as being on a level par to actual consent. It is an issue that I have raised previously in debates on this issue, and it is an issue that I discussed at a Queen's University medical ethics debate that I participated in last year and one that was shared by many people in the room. There were concerns that deemed consent or presumed consent could violate a patient's right to make an informed decision, and so does not uphold respect for their autonomy. <BR /> <BR />The specific purpose of informed consent is to protect a patient's right to autonomy, as is made clear in the Universal Declaration on Bioethics and Human Rights in 2005 and the Declaration of Helsinki at the World Medical Association meeting in 2008.”
“That is the point that I tried to make to Mr Agnew previously. On the issue of consent, it says:”
“<BR /> <BR />I raised some of the legal concerns about the absence of consent, and I do not think that the intention of those who drafted the Bill is for organs to be taken when that is not the express wish of the individual concerned. I do not, for one second, say that that is the intention of the drafter of the Bill. However, as legislators, we need to be alive to these issues and ensure that we study and scrutinise the problems that this type of Bill could create. <BR /> <BR />I will again quote from the Organ Donation Taskforce document, which has a section on ethical issues. A special working group was set up for that. It says that:”
“<BR /> <BR />I think that that is a much better system than one where we automatically assume that consent has been given but have to check once a year that people are aware of the system. I think that that is a dangerous system. It is a dangerous precedent to create in law or medicine, and there are huge challenges around it. I want to try to eliminate, rather than limit, confusion. I think that by moving to a system where we ask people to give informed consent during their lifetime is a much better safeguard in ensuring that families, at a very difficult point in their lives, make decisions that they are confident and comfortable about.”
“The intention of a public awareness campaign should be to try to actively get people to make a decision in an opt-in system. Indeed, I paid tribute to Mrs Dobson at the beginning of the debate, because we are all much more aware of organ donation in Northern Ireland now than we perhaps were four years ago. The fact that the media have very much reported on some of her campaigning has meant that families will have those conversations and make decisions, which is a good thing. I also think that the Department of Health, under various Ministers, should be commended for its public awareness campaign with the PHA in recent years. If we look at the figures for that campaign, we see that more and more people are joining the organ donation register or are having that conversation with families.”
“The failure to register an objection can never be considered to be the same as giving informed and express consent. I have raised that issue a number of times, and I will continue to do so, because that is where some of my major concerns come from.”
“I recognise that Mrs Dobson is trying to ensure in the Bill that there are certain safeguards around that. However, I will read out the statement again, because this is where my concern around consent comes from:”