On Tuesday 17 Jun 2014, Andrew Griffiths, (Burton) (Con), secured a Westminster Hall debate on the Organ Donation Register, HC Hansard 17 June Vol 582, Col 1WH, and although policy issues were not debated, this provided a timely summary of the salient facts, the issues involved and an indication of current government considerations in this area in advance of National Transplant Week 2014, 7 – 13 July.
Introducing the debate, he stated that in Britain today, ~7,000 people are currently on the waiting list for an organ transplant, and statistics suggest that 1,300 of these are likely to die as they become too ill to receive a transplant. In 2013 the number of people who became organ donors increased 13.7% from 1,164 to 1,323, and transplants from those donors have risen by a third to more than 3,000. At present, just under a third of the UK population is on the organ donation register, and on 12 June 2013, the total was in excess of 20 million people.
He further observed that the UK has one of the lowest rates of organ donation in Europe, and cited Spain as having almost three times as many donors per million people , [Col 2WH]. His statement that:
“all the evidence shows—the surveys show—that 96% of the population support the principle of organ donation, yet only 30% of the population register”,
was followed by discussion on possible methods of improving the sign-up rate. Other important points raised included: the reluctance of families to permit organ donation – more than 40% of families refuse to allow donation, sometimes against the wishes of the patient, [Col 4WH]; and whilst people from BME backgrounds  are up to three times more likely to need an organ transplant, they are less likely to donate – “3.6% of people on the organ donation register are from ethnic minority backgrounds, despite their making up 10.8% of the population and . . . 27% of the waiting list”, (Col. 5WH).
Responding to the points raised, the Parliamentary Under-Secretary of State for Health (Jane Ellison) concluded the debate, (Col. 20WH), and stated inter alia that the Government is continuing the work of previous administrations by investing in the donation programme to optimise transplantation” but cautioned “the pool of [donors] is not as big as we often think and is actually relatively small”.
With regard to the 40% of families who veto organ donation, she made a number of important points, (Col. 21WH)
“To be clear, we do not need to change the law, which currently protects the right of the individual to be an organ donor. The challenge comes from the complexity and sensitivity of operational issues and not legal issues.”; “It is also worth saying that, even in Wales and in Northern Ireland were the private Member’s Bill to succeed, it is still the case that a family can override a decision in the circumstances that I have described”;
“It is absolutely right for Members to place concerns on the record about donation from black, Asian and minority ethnic communities, where the refusal rate to donation is nearly 80% compared with around 40% nationally, which is significant”.
My Department supports the National Black Asian and Minority Ethnic Transplant Alliance, which does great work in this area, including, for example, on consent rates.
“We can do many things to encourage more people to register. We are absolutely open to ideas from hon. Members on both sides of the House and all parts of the country and the world. We review and are led by the evidence”
Although an opt-out scheme for the UK is favoured by British Medical Association, the British Heart Foundation and Kidney Research UK, Andrew Griffiths indicated that he was not intending to argue for the opt-out system, and it was clear that the government was not persuaded by recent legislative developments in Wales and Northern Ireland. The achievement of NHS Blood and Transplantation’s 2020 goals is not solely dependent upon increasing numbers on the Organ Donation Register or the reducing the number of families who object to donation of organs from deceased relatives, but these remain critical issues to be resolved and the solutions being sought are operational rather than legal. An issue not addressed during the debate was the human rights issues associated with each of the different forms of “opt-out” and “opt-in” arrangement that are in use in the UK and elsewhere, see Table below.
The recent POST Note PN 441 , Organ Donation and Transplants, provides a useful summary of the The Human Transplantation (Wales) Act 2013 anaw 5, the new UK strategy for the improvement organ transplant rates, Taking Organ Transplantation to 2020: A UK strategy, NHSBT, 2013, and other policies to increase the availability of donor organs in the UK. Detailed organ donation and transplantation statistics are published by NHS Blood and Transplant, here, and the following Table summarizes different forms of organ donation scheme that are used.
Table: Different consent systems in use around the world 
|1: ‘Hard’ opt-out system||Doctors may remove organs from every adult who dies – unless a person has registered to opt-out. Applies even if relatives know that the deceased would object to donation but failed to register during life.||Austria|
|2: ‘Hard’ opt-out system which exempts some groups||Doctors may remove organs from every adult who dies – unless person has registered to opt-out, or person belongs to a group defined in law as exempt from system.||Singapore: Muslims chose to opt out as a group.|
|3a:‘Soft’ opt-out system: no requirement to consult relatives||Doctors may remove organs from each adult who dies unless person has registered to opt-out, or their relatives instruct doctors not to take organs. Onus on relatives to instruct doctors.||Belgium|
|3b: ‘Soft’ opt-out system: relatives must be consulted.||Doctors may remove organs from each adult who dies unless person has registered to opt-out. It is good practice for doctors to ask the relatives for their agreement at the time of death.||See comments below re: Spain and Wales|
|4: ‘Soft’ opt-in system||Doctors can remove organs from adults who have opted-in. Onus on each person to decide to opt-in. Normal practice to inform relatives of opt-in; doctors can decide not to proceed if faced with opposition from relatives.||UK, at present|
|5: ‘Hard’ opt-in system||Doctors may remove organs from adults who have opted-in. Onus on each person to decide to opt-in. Relatives may not oppose the person’s wishes.||–|
|6a: Choice to opt-in or opt-out||People can register their choice to opt-in or opt-out.||–|
|6b: Choice to opt-in or opt-out||People must register their choice to opt-in or opt-out.||–|
 Population as at June 2013 was 63.7M.
 “In the UK, we have 13 donors per 1 million people, which is still one of the lowest rates in Europe”: this appears to relate to EU data on the number of transplants, not donors, per million of inhabitants, for which the figure for the UK is 13 and that for Spain is 33. Glyn Davies (Montgomeryshire) (Con) later clarified that opt-out legislation was introduced in Spain in 1979 but was soon abandoned and its current performance is the result of other measures that have been introduced, [Col 13WH].
 Black and Minority Ethnicity.
 Parliamentary Office of Science and Technology: Published 12 September 2013, Amended 15 April 2014.
 The potential impact of an opt-out system for organ donation in the UK, An independent report from the Organ Donation Taskforce, , Table 1, Page 10.
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The above summary of different forms of law for organ ‘donation is wrong in relation to the Wales Act; you say “ 3b: ‘Soft’ opt-out system: relatives must be consulted. Doctors may remove organs from each adult who dies unless person has registered to opt-out. It is good practice for doctors to ask the relatives for their agreement at the time of death. Spain, future scheme in Wales.”
The true definition of a soft opt-out is that produced by Professor Edwards ,Swansea University, published in his report to the Welsh Government of the options for improving organ transplantation: under a soft opt out,.Families always have the right to decide if the deceased did not register his decision whether to donate or refuse to donate. Spain is not a soft opt-out system but as Spain operates all families always have the right to decide if the organs may be removed even if the deceased gave his consent.
In the Wales Act families have no right ever to object or decide ; as the Health Minster said ” There is no family right of refusal”. There is no place for consideration of family objections even where religious or ethical. No family member has to be present or involved at all; it is merely the need for ease of medical practice to improve the chances of successful transplantation that a family is involved at all; the possible family involvement is not about consulting their views or wishes.
Thank you for your comment. However, the Welsh Government regards the scheme as a “soft opt-out”, and under certain circumstances, relatives or long standing friends do have an opportunity to object.
The web site of the Welsh Government states:
“the Human Transplantation Wales Act received Royal Assent on 10 September 2013. This law will come fully into effect on 1st December 2015. Until then, the current opt-in system will remain in place. The Act introduces a soft opt-out system for consent to deceased organ and tissue donation in Wales from 2015.”
The Explanatory Memorandum to the Bill, as presented, states:
“[i]n relation to deceased donation, [the Bill] gives effect to the Welsh Government’s commitment to introduce a soft opt-out system of organ and tissue donation in Wales. A soft opt-out system is one where consent to the removal and use of organs and tissues for transplantation is deemed as having been given unless the deceased objected during their lifetime, and where the next of kin will be involved in the decision making process.”
This is detailed in section 4(2) and (3) of the Act which indicate that other than in the case of excepted adults and children, which are considered under sections 5 and 6 respectively, a decision regarding transplantation activity involving a person’s body, or relevant material from that body, is deemed to have been given unless: during the lifetime of that person, that person formally indicates that he/she does not consent to that activity; or appoints a person or persons to deal with the issue of consent (i.e. express consent) after their death.
Furthermore, section 4(4) of the Act states that consent is not deemed to have been given where “(a) a relative or friend of long standing of the deceased objects on the basis of views held by the deceased, and (b) a reasonable person would conclude that the relative or friend knows that the most recent view of the deceased before death on consent for transplantation activities was that the deceased was opposed to consent being given.
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