Proposed Legislative Competence Orders relating to Organ Donation and Cycle Paths - Welsh Affairs Committee Contents

Written evidence submitted by the Anscombe Bioethics Centre


  • Catholic theology strongly supports voluntary organ donation.
  • Two committees which cover Wales have considered evidence and recommended against a change in the law regarding consent for donation.
  • The evidence for demand for a change in the law in Wales is equivocal.
  • A change in the law regarding consent for donation would cause complex cross-border difficulties.
  • There is no clear evidence that this change would lead to an increase in donation.
  • There is evidence that this law could alienate minorities and infringe the rights of individuals to privacy and to freedom of religious expression (including right of burial in accordance with custom and religion).


0.1  The Anscombe Bioethics Centre is the oldest national bioethics centre in the United Kingdom, established in 1977 by the Roman Catholic Archbishops of England and Wales. It was originally known as The Linacre Centre for Healthcare Ethics and was situated in London before moving to Oxford. The Centre engages with the moral questions arising in clinical practice and biomedical research. It brings to bear on those questions principles of natural law, virtue ethics, and the teaching of the Catholic Church, and seeks to develop the implications of that teaching for emerging fields of practice. The Centre engages in scholarly dialogue with academics and practitioners of other traditions. It contributes to public policy debates as well as to debates and consultations within the Church.


0.2  This response will first outline a Roman Catholic understanding of organ donation, and how this coheres with a true humanism and helps to reinforce positive attitudes of solidarity within society. It will then turn (in paragraphs 1.1 and following) to the consultation questions.[1]

0.3  Organ transplantation from the dead saves and transforms lives. It offers hope for those with diseases that would otherwise be untreatable, or treatable only by ongoing, imperfect means such as kidney dialysis. Transplantation is, in principle, welcomed by the Catholic Church.

0.4  When solid organ transplants were first being attempted in the 1950s, Pope Pius XII explained to Catholics that this was "not a violation of the reverence due to the dead". Rather, it was justified because of "the merciful charity shown to some suffering brothers and sisters."[2] More recently Pope John Paul II said that, "We should rejoice that medicine, in its service of life, has found in organ transplantation a new way of serving humanity".[3] Far from opposing the use of the dead body in the service of medicine, the Church actively encourages Catholics to offer their organs after death. The Catechism of the Catholic Church states that "Organ donation after death is a noble and meritorious act and is to be encouraged as a expression of generous solidarity".[4]


0.5  While encouraging Catholics to donate organs, Pope John Paul II emphasised that what justifies the use of the human body is the free act of donation. "Above all, this form of treatment is inseparable from a human act of donation. In effect, transplantation presupposes a prior, explicit, free and conscious decision on the part of the donor or of someone who legitimately represents the donor, generally the closest relatives. It is a decision to offer, without reward, a part of one's own body for the health and well-being of another person. In this sense, the medical action of transplantation makes possible the donor's act of self-giving, that sincere gift of self which expresses our constitutive calling to love and communion."[5]

0.6  If the organs are taken without the consent of the donor, or that of the relatives speaking on behalf of the donor, then this is not an act of "donation". It is taking without asking. The words of Pope John Paul II regarding donation without consent are very clear: "In such a perspective, organ transplantation and the grafting of tissue would no longer correspond to an act of donation but would amount to the dispossession or plundering of a body."[6]

0.7  For this reason the Catechism says that organ donation "is not morally acceptable if the donor or his proxy has not given explicit consent."[7] It is not morally acceptable because it fails to respect the human meaning of the human remains. Instead of donation being an expression of solidarity between people, it becomes a violation of the dead.


0.8  It should not be assumed that undermining the principle of consent will in fact increase the availability of organs. A look at the history of medicine shows that for many centuries there was a stigma attached to dissection. Bodies were taken from the poor and criminals who died in prison, and so people did not want the bodies of their loved-ones handed over to the surgeons. The consequence was a shortage of dead bodies, and this shortage gave rise to widespread grave robbing. This reached a peak in the early nineteenth century when the price for fresh dead bodies induced Burke and Hare to turn from grave robbing to murder. It was in reaction to this that, beginning with the Anatomy Act 1832, there was a concerted attempt to encourage voluntary donation and to remove the stigma associated with dissection.

0.9  The principle of voluntary donation has remedied a problem which had dogged medicine for centuries. The success of voluntary schemes should not be underestimated. According to UK Transplant a total of 17,761,585 people or 28% of the entire population have joined the NHS Organ Donor Register.[8] There are other countries which have still higher numbers of people on the organ donor register. Currently it is not clear whether people are given adequate information prior to signing the ODR, and thus whether it constitutes effective consent. Nevertheless, the success of efforts directed at increasing voluntary participation should be acknowledged as should the ethical importance of personal involvement when the decision pertains to one's own remains: no decision about me without me. Thus, subject to adequate information, sensitivity to relatives of the dying, and other ethical constraints, it is "opting in" for organ donation that should be encouraged.

0.10  In contrast, consider the reaction to the Alder Hey scandal and the sight of parents forced to bury parts of their children in three or four ceremonies. This dramatically weakened public trust in the collection and storage of body parts. The same kind of scandal could happen with organ donation if consent is not respected.

0.11  A system of donation, in which people explicitly give permission for their organs to be used after their death, allows the human body to be used while respecting the dead. It is also helps to reinforce positive attitudes of solidarity within society. This is what Pope John Paul II meant when he talked of organ donation as part of the culture of life. An "opt out" or "presumed consent" system of organ donation undermines the principle of consent and effectively, even if not intentionally, violates the reverence due to a dead body. Even in pragmatic terms, there is a serious danger that it would harm transplant medicine because it would erode public support for organ transplantation.


1.  Is the LCO request in the spirit and scope of the devolution settlement?

1.1  It is first necessary to set out the spirit and scope of the devolution settlement. No referendum has shown a majority in Wales in favour of the independence or for a Welsh Parliament and the referendum by which the National Assembly for Wales was introduced in 1997 was by the narrowest of margins: 50.3% to 49.7%.

1.2  While support for the Assembly may have grown as it has established itself, this has not been tested by referendum. The present procedure whereby Legislative Competence Orders (LCO) must be sought for each specific Matter fairly reflects the need for an external check and balance from Westminster on the powers of the Assembly. Unless and until a referendum gives greater powers to the National Assembly for Wales or creates a Welsh Parliament it is appropriate for each such proposal to be scrutinised by the Welsh Affairs Committee or Welsh Grand Committee and, if the matter is then recommended, voted on by both Houses of Parliament.

1.3  It is in the spirit and scope of the devolution settlement that such powers not be given to the Assembly without a LCO request. The merits of this particular LCO are taken up in response to further questions below.

2.  Is the use of the LCO mechanism in accordance with the Government of Wales Act 2006?

2.1  The use of the LCO mechanism is in accordance with the Government of Wales Act 2006. Nevertheless, this specific LCO raises complex legal issues, has wide implications' is politically and ethically controversial, and potentially divisive. Hence, it must be subject to careful scrutiny to consider the cogent reasons why, in this case, a LCO should not be granted.

3.  Does the Order relate to Field 9, Part 1 of Schedule 5 and Subject 9, Schedule 7 of the Government of Wales Act 2006?

3.1  The Order does relate to Field 9, Part 1 of Schedule 5 and Subject 9, Schedule 7 of the Government of Wales Act 2006.[9] Nevertheless, in this case there are cogent reasons for not granting an LCO.

4.  To what extent is there a demand for legislation on the matter(s) in question?

4.1  The alleged demand for legislation in this case is set out in the Memorandum from the Welsh Assembly Government (MWAG) on the Proposed Legislative Competence Order relating to organ and tissue donation for the purposes of transplantation.[10]

4.2  The MWAG acknowledges that the Organ Donation Task Force considered this question and great depth and recommended against it[11] (MWAG para 18). However, the memorandum does not comment on the strength of that recommendation or the reasons behind it. Instead it lists organisations which "supported the introduction of presumed consent" including, among others, the British Transplant Society (BST). No citation is given. In fact the BST has no approved policy statement on consent for organ transplant. Furthermore, in 2007 when this issue was raised, the Vice-President of BST is reported to have stated that "In my opinion it should be up to the individual whether they donate their organs and it shouldn't be left to a default position".[12] The closest to an official statement on this issue came in 2002 with the BST response to the consultation Human Bodies Human Choices (in 2002). On this point it was stated that "opinion is usually split".[13] It should also be noted that NHS Blood and Transplant also have no position for or against a change to presumed consent legislation.[14]

4.3  The Welsh Assembly memorandum also acknowledges that in 2008 the cross-party Health, Wellbeing and Local Government Committee of the Welsh Assembly held an inquiry into presumed consent for organ donation and recommended against[15] seeking a Legislative Competence Order. Again the memorandum fails to say what considerations led the Committee to this conclusion (MWAG para 19).

4.4  Despite recommendations against adopting an "opt out" system, both from the Organ Donation Task Force and from the Welsh Assembly Committee, Edwina Hart AM, Minister for Health and Social Service, launched a further Welsh Assembly Government consultation to assess the opinion of the public in Wales.[16] The consultation questions were highly skewed, first spending 30 pages presenting evidence for public support for a change in the law and then giving the consultation questions which described the option of retaining the existing legislative framework as the "do nothing" option.[17] The Report of the written consultation[18] states that it received 68 submissions, but curiously does not give a breakdown as to how many of these were in favour of the proposal. Instead it states that two of the submissions, that from Clwyd Community Health Council and that from the Kidney Wales Foundation included the results of their own surveys or petitions, comprising a total of 598 individuals. In the case of Kidney Wales Foundation this petition was clearly the result of a campaign. This effectively represents one side of the argument but provides a very poor basis for weighing up the relative strength of opinion for and against. Rather than giving the number of organisational submissions for or against the view, the Report lumped these together with the individual responses to the survey and petition so that the organisation responses were effectively ignored in its analysis. Given that 90% of the reported feedback thus represented only two of the 68 responses, and one of these was clearly the product of a campaign, the Report gives no clear basis for assessing opinion.

4.5  A second form of evidence was a telephone poll which showed a majority in favour of changing the system (by 57% to 39%) but this poll showed support for a hard "opt out" (58% to 47%) rather than the "soft opt out" favoured by the Welsh Assembly government.[19] It should also be noted that this was a phone poll showing spontaneous opinion on the basis of relatively little information or time for discussion or reflection on the issues.

4.6  The most in depth attempt to uncover public opinion was by a series of public meetings and a parallel online consultation where people were given several options and allowed time to absorb information. In this exercise a majority came out against a "soft opt out" system. According to the figures provided in the full report, only 22% favoured a "soft opt out system" while 60% preferred some kind of "opt-in" system (either "soft", "hard", a choice to "opt in or opt out", or a "mandated choice").[20]

4.7  On the basis of a fair analysis of the consultation, not all of which has been made available (for example the proportion of organisational submissions favouring "opt out") it is overstating the case to say that "feedback from these demonstrated support for the introduction of new laws for a 'soft' opt-out system" (MWAG para 20). It seems rather that a very selective presentation of a heavily weighted consultation shows some support, but the more information is presented the lower the level of support.

4.8  Given that two reports on consideration of a great range of evidence have recommended that the system not be changed, while evidence of public support for change is equivocal, there is therefore no clear demand for a change in the law. Furthermore, the considerations of the two committees that recommended against changing the law were not only based on majority opinion. The committees were also unconvinced that this change would radically improve donation rates (an opinion confirmed in a recent article in the British Medical Journal).[21] Another important consideration was whether this system might alienate religious and ethnic minorities precisely when the health service is seeking to engage with these communities. While the size of these minority communities may be smaller in Wales than in England, this is not a reason to overlook them. Arguably it is a function of the check and balance provided by Westminster that it prevents the Assembly from enacting legislation which would be alienating for minorities within Wales.

5.  Are there any cross-border issues relating to the LCO

5.1  There are many cross-border issues in this case. The organ transplantation in Wales is managed by the Organ Donation and Transplantation Directorate of NHSBT. This is a cross border function, as is the organ donation register. However, any change in the system of consent (as allowed by this LCO), for example the replacement of an "opt in" system with a "soft opt out" system, would potentially have an impact on the organ donation register. For "opt out" implies there is no reason to have to opt in.

5.2  The MWAG makes the point that when recently "relatives were approached for a decision on this matter, up to 40% opted not to donate" (MWAG para 12). However, this is most effectively remedied by encouraging people to register on the Organ Donation Register (ODR). Where the family knows their relative is on the ODR, the consent rate is 90%.[22] It is clear that families are much more likely to consent when they know that this was their relative's stated wish. One possible consequence of an "opt out" system is that it may discourage people from signing the ODR and hence families would no longer know whether it was the wish of their relative to donate his or her organs. This is a cross-border concern precisely because the ODR and the transplant directorate are cross border. Changes in the system of consent which could affect both sides of the border should not be decided unilaterally by Wales but by Westminster and should be informed by the evidence of the Organ Donation Task Force.

5.3  As organs obtained in Wales are currently sometimes used in England (and vice versa), the change of the system of consent in Wales would create an immediate problem for practice in England. Either transplant practice in England would be forced to accept a weaker system of consent (in relation to organs from Wales) or they would be inhibited from using organs from Wales. The former is the more likely scenario and thus unilateral legislative change in Wales would change the consent requirements for donation in England. This is therefore a matter more properly reserved to Westminster rather than decided only in Wales.

6.  Are the purpose and scope of the LCO clearly defined, including the terms and definitions used?

6.1  The scope of the LCO are defined clearly and clearly cover the power to move away from an "opt in" system and thus away from support for nationally based ODR.

7.  Does the LCO have the potential to increase the regulatory burden on the private or public sector?

7.1  If a system of "opt out" is to be real then this would place on the public sector a duty to create a second register by which to opt out, and information as to how to opt out. As this system would apply only in Wales there would be a question as to how to relate it to the cross-border ODR. Many people, of course, live part of the time in both countries.

8.  Would the proposed LCO necessitate the formation or abolition of Welsh institutions and structures? If so, where does the legislative competence to exercise such changes lie?

8.1 See previous answer.

9.  Is the use of an LCO more appropriate than, for example, the use of framework powers in a Westminster Bill to confer competence on the Assembly?

9.1  It has been argued above that the proposal in this LCO is problematic. It would be equally problematic were it to be effected through some other mechanism.

10.  Has full use been made of any existing powers to issue statutory guidance and/or secondary legislation in relation to this Matter?

10.1  It is not possible to pursue this proposal by statutory guidance or secondary legislation. Nevertheless, the proposal in this LCO is problematic and none the less problematic for the fact it can only be pursued by an LCO.

11.  Does the LCO have the potential to cause confusion regarding legal jurisdiction and the individuals to whom any Measure would apply to?

11.1  Despite claims in the MWAG that it would be easy to identify those to whom the measure applied, there is scope for potential confusion given the movement of population and services across the border (see also answers 4 and 5 above).

12.  What are the implications of Article 8 and Article 9 of the European Convention on Human Rights on any such Measure? Concurrent to the work of the Welsh Affairs Select Committee, a detailed legal examination of the proposed Order will be conducted by the Constitution Committee, House of Lords

12.1  As argued above, an important consideration for the Organ Donation Task Force and the cross party Welsh Assembly Committee was the impact of the proposed change on minority groups. Presumed consent clearly impacts upon the right to private life of relatives and arguably this should encompass also the prior wishes of the potential donor. There would seem to be a prima facie right to have one's remains treated respectfully in accordance with one's wishes during life.

12.2  This is reinforced by consideration of Article 9 as some objections to organ transplantation are religious in nature. This is illustrated by the recent statement by the Chief Rabbi on organ transplantation,[23] but it would be utterly mistaken to think this was an issue confined to Judaism. Not only with Judaism but also with Islam[24] and within Christianity[25] there are some people who have religious or conscientious objections to post mortem donation as it is currently practised for some cases (for example, because they are unconvinced by changing definitions of and criteria for determining death). To take someone's organs against their prior wishes, when these wishes were expressions of religious belief, on the basis of a presumption of consent, is in clear contravention of Article 9.

February 2011

1 Back

2   Pius XII, "Address to the delegates of the Italian Association for Cornea Donors and the Italian Union for the Blind", 14 May 1956. For further references see D A Jones (2001) Organ Transplants London: Catholic Truth Society. Back

3   John Paul II "Address to the participants at the First International Congress on the Transplant of Organs", 20 June 1991. Back

4   Catechism of the Catholic Church Paragraph 2296, emphasis added. Back

5   John Paul II "Address to the participants at the First International Congress on the Transplant of Organs", 20 June 1991. Back

6   Ibid. Back

7   Catechism of the Catholic Church Paragraph 2296. Back

8 (consulted 15 February 2011) Back

9 Back

10 Back

11 Back

12 Back

13 Back

14 Back

15 (Recommendation 12, page 33). Back

16 Back

17 (Page 31) Back

18 Back

19 (page 27) Back

20 (page 24) Back

21   Fabre, J, Murphy, P, Matesanz, R, Presumed consent: a distraction in the quest for increasing rates of organ donation BMJ 2010; 341:c4973 doi: 10.1136/bmj.c4973 (Published 18 October 2010) Back

22 (paragraph 1.15). Back

23 Back

24   For a recent example see Bedir, A and Aksoy, S. Brain death revisited: it is not "complete death" according to Islamic sources J Med Ethics (published online 2 February 2011) Back

25   Again a recent example can be cited: see the interview on the Vatican news service Zenit with American Catholic bioethicist Professor E Christian Brugger example FeXSIGFPwM%2f4Lg4AAAJgneaAAC%2brzMMVFeXSIGFPwM%2f4Lg4AAAyPRHdAAAJ&attid0=EAC2HNxJnj5TSrx2o%2fqtW7Ac&attcnt=1 

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Prepared 4 April 2011