Written evidence submitted by the Anscombe
Bioethics Centre
MAIN POINTS
- 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).
THE ANSCOMBE
BIOETHICS CENTRE
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.
THE CATHOLIC
VIEW OF
ORGAN DONATION:
ORGAN DONATION
AS A
PROFOUND ACT
OF HUMAN
SOLIDARITY
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]
THE NEED
FOR CONSENT
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.
THE BENEFITS
OF A
SYSTEM OF
TRUE DONATION
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.
CONSULTATION QUESTIONS
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 http://www.parliament.uk/business/committees/committees-a-z/commons-select/welsh-affairs-committee/news/organ-donation-lco/ 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
http://www.organdonation.nhs.uk/ukt/ (consulted 15 February 2011) Back
9
http://www.legislation.gov.uk/ukpga/2006/32/contents Back
10
http://www.official-documents.gov.uk/document/cm79/7992/7992.pdf Back
11
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_090312 Back
12
http://www.sciencemediacentre.org/pages/press_releases/07-07-17_organ_transplant_opt_out.htm Back
13
http://www.bts.org.uk/ethics/archive/human-bodies-human-choices/?locale=en Back
14
http://www.uktransplant.org.uk/ukt/newsroom/statements_and_stances/statements/opt_in_or_out.jsp Back
15
http://www.assemblywales.org/cr-ld7192-e.pdf (Recommendation 12,
page 33). Back
16
http://wales.gov.uk/consultations/healthsocialcare/organdonation/?lang=en Back
17
http://wales.gov.uk/docs/dhss/consultation/090508organdonationen.pdf
(Page 31) Back
18
http://www.wales.nhs.uk/documents/091026organdonationcrepen.pdf Back
19
http://wales.gov.uk/docs/dhss/consultation/090508organdonationen.pdf
(page 27) Back
20
http://wales.gov.uk/docs/dhss/consultation/090508organdonationen.pdf
(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
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_090312
(paragraph 1.15). Back
23
http://chiefrabbi.org/ReadArtical.aspx?id=1725 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
https://mex07a.emailsrvr.com/owa/?ae=Item&t=IPM.Note&id=RgAAAADR5Y3L%2fxKfQrhxv9QC%2fGWlBwC%2brzMMV
FeXSIGFPwM%2f4Lg4AAAJgneaAAC%2brzMMVFeXSIGFPwM%2f4Lg4AAAyPRHdAAAJ&attid0=EAC2HNxJnj5TSrx2o%2fqtW7Ac&attcnt=1 Back
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