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Dharmapeople Latest News : July 2009
Provisional Agenda for the
Constituent Meeting for the Buddhist Chaplaincy Support Group to be held on Sunday the 5th July 2009 at 13:30 at the Buddhist Society NASACRE : Recruitment and Training Programme (East, South-East,
South-West) Museum of World
Religions meeting, 9-10 July 2009 Birmingham Interfaith: IFN: Circular 17/09
Pandemic Flu guidelines and FCCC minutes Organ
Donation : october 2008 Final Report ~ 0 ~ Provisional Agenda for the
Constituent Meeting for the Buddhist Chaplaincy Support Group to be held on at the Buddhist Society (at 13;35 quick round of who we are and what
we do Proposal It is proposed to
set-up a Buddhist Chaplaincy Support Group with the following aims.
2) Not
within the scope of the proposed group:
3) Short/Medium-term
action plan (1st – 6th month):
4) Medium-term
action plan (6th – 12th month):
5) Long-term
action plan (12 months+ )
Note: The issue of 'Endorsing Authorities' for the Chaplaincy
projects will not be addressed in the near future, as we feel that priority
should be given to the setting up and establishment of our infrastructure and
support network. We believe that in the fullness of time, suitable
representational arrangements will naturally emerge of their own accord,
reflecting the level of maturity and integration achieved by various
projects. ~ 0 ~ NASACRE : Recruitment and Training Programme
(East, South-East, South-West)
You may be aware that NASACRE has received funding from the
Department for Children, Schools and Families (DCSF) and the Curriculum
Cohesion Unit to develop its recruitment and training programme designed to
build SACRE capacity. This funding is phased over two years and the second
year is about to commence. The programme will be focused principally on
filling vacancies on Group A (basically any other faith group apart from CoE)
in the East of You will find information on what a SACRE (Standing Advisory
Council on Religious Education) does on the National SACRE web site : www.nasacre.org.uk You might also want to have a look at the following documents
: http://www.dharmapeople.com/ftp/SACRE_RE/NASACRE/NASACRE_training.htm, and http://www.dharmapeople.com/ftp/SACRE_RE/Lewisham_SACRE.doc Candidates should be aware that between two and four days of
their time will be taken up by induction/training activities, but some of
those might take place in the evenings. Financial compensation is only envisaged for expenses (e.g.
travel) but not for taking time off for the training as such. Ideally suitable candidates would have some experience of
education, and certainly an interest in Religious Education. The role involves
liaising with the faith communities, schools (Teachers and children) and the
Local Authorities. The candidate should have some time to spare (not a lot, just
a few days per term perhaps, and therefore people not in full-time
employment, or just retired, or young single parents, young teachers, etc
might make ideal candidates). They should also be prepared to represent their
whole faith community, regardless of their own specific background (either in
terms of culture or tradition), and be ready and willing to engage
representatives from other faiths in meaningful and constructive dialogue. Should multiple suitable candidates apply for the same
Authority, the size of the community they represent would become the
discriminating factor. Candidates are selected by the Local Authority itself. If anyone from yours, or other Buddhist groups you are in
contact with, are interested in exploring the possibility of engaging in
SACRE activities, please ask them to get in touch with me, and where
vacancies are available, I will endeavour to put then in touch with the
NASACRE Recruitment Officer. As far as the first cohorts are concerned, right now I am
aware of vacancies in :
Plus two other authorities from a previous cohort Bexley in South But I am also aware of a number of other potential vacancies
in the South East and beyond, so please do register your interest in any
case, because opportunities arise all the time. To find out more about your local SACRE, look under the
Members page in the NASACRE site, or search the web specifying :
e.g. ‘ If you or someone in your group would like to become Buddhist
Representative on your local Authority SACRE , and you live in one of the
mentioned Regions please let me know as soon as possible, sending me any
details about yourself and your experience that would enable your local
authority to make on informed decision about your application : please send
it to mmarcigaglia(_at_)yahoo.co.uk where the (_at_) stands for @; Mariano M.
, Tel 020 72520804 (evenings and weekends) ~ 0 ~ Sakyadhita
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Name |
Organisation |
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Sally Masheder |
Network of Buddhist Organisations |
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Bryan Appleyard |
Buddhist Society |
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Dr Indarjit Singh |
Network of Sikh Organisations |
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Jasdev Singh Rai |
British Sikh Consultative Forum |
|
Ravinder Singh¹ |
British Sikh Consultative Forum |
|
David Katz |
Board of Deputies of British Jews |
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Dr Malcolm Brown |
Archbishop’s Council of the Church of England |
|
Reverend Debbie Hodge |
Churches Together in |
|
Bishop Joe Aldred |
Churches Together in |
|
Yinka Adeniyi |
Freedom’s |
|
Reverend Katei Kirby |
African |
|
Reverend Janet Murray |
Community Family Challengers Project |
|
Pastor Modupe Afolabi |
Redeemed |
|
Sharon Platt-McDonald |
|
|
David Jones |
Catholic Bishops’ Conference of |
|
Dr Natubhai Shah |
Jain Network |
|
Naomi Phillips |
British Humanist Association |
|
Raj Bharkhada |
Hindu Forum of |
|
Ramesh Majithia |
National Council of Hindu Temples |
|
Ramanbhai Barber |
National Council of Hindu Temples |
|
Dr H. V. S. Shastry2 |
Hindu Council |
|
Malcolm M. Deboo |
The Zoroastrian Trust Funds of |
|
Mufti Zubair Butt |
Muslim Council of |
|
Mohammed Umar |
The Ramadhan Foundation |
|
Khurshid Ahmed |
British Muslim Forum |
|
Barney Leith3 |
Baha'i Community of the |
¹Attended meeting with Jasdev Singh Rai as an observer
2In addition to attending the interview, Dr Shastry collated responses from other representatives of the Hindu community, which are referenced in this report. These were:
·
Dr
· Kishor Ruperalia, World Council Of Hindus
·
Dr Raj Pandit
Sharma, Hindu Priest Association
3Views submitted in written format rather than via interview
Following an initial introductory letter, 17 interviews were arranged with 25 of the individuals listed above. Views were gathered from a further individual in written format.
The majority of the interviews were conducted as 1:1 sessions. However, group meetings were held where this was the advised course of action. Interviews were led by Gurch Randhawa, the Chair of the Cultural Advisory Sub-Group, and covered the following topic areas:
· Their faith (or belief) group’s position on the receiving of organs from transplantation
· Their faith (or belief) group’s position on the donating of organs for transplantation
· Their faith (or belief) group’s position on the current legal system for organ donation, opting-in, whereby members of the public volunteer to become an organ donor
· Their faith (or belief) group’s position on the proposed legal system for organ donation, opting-out, whereby members of the public are assumed to be organ donors unless they have formally opted out during their lifetime
· Their advice on UK Transplant’s current leaflet explaining their faith’s position on organ donation
· Their advice on how in the longer term the government can engage with their faith at a local level
A member of the COI team was also present at each interview to observe and record the interview. The interviews were recorded using a digital recording device.
Following each interview, a transcript was sent to each interviewee with an invitation to make any amendments.
2.3. House of Lords submissions
A number of the organisations interviewed as part of this study had sent responses to the House of Lords ‘Inquiry into the EU Commission's Communication on Organ Donation and Transplantation: policy actions at EU level’. These were:
Board of Deputies of British Jews
British Humanist Association
British Sikh Consultative Forum
Church of England
These submissions have been studied and the views expressed taken into account in this report.
The interviews were conducted between 9th
June and
Whilst the majority of organisations interviewed to prepare this report represent faith groups, it is important to recognise that some (e.g. Humanism) are not religions, but belief groups. Consequently, the term ‘faith and belief groups’ is used throughout the report when referring to the groups collectively.
As noted in 2.2, most interviews were conducted as 1:1 sessions, but some were held as group meetings. When indicating how widely views were held, quantities given reflect the number of interviews in which a view was expressed, rather than the number of individuals holding a view. The individual who responded in written format is referred to as an ‘interviewee’ throughout, and is included in these quantities. The following expressions are used throughout the report:
· The minority of interviewees = views expressed in less than half of the interviews
· The majority of interviewees = views expressed in more than half of the interviews
· Some interviewees = views expressed at a small number of interviews (up to 5). This is used where interviewees are expressing views which were not explicitly asked for, and therefore not commented on by other interviewees
· Many interviewees = views expressed in a large number of interviews (6 or more). As above, this is used where interviewees are expressing views which were not explicitly asked for, and therefore not commented on by other interviewees, but in higher volumes
The spelling ‘gurdwara’ (which means the House of God, and refers to a Sikh place of worship), rather than the alternative ‘gurudwara’, is used throughout the report, although both spellings were used by interviewees.
· The majority of interviewees are supportive of the opt-in system, and favour retaining it over introducing an opt-out system. Whilst the shortcomings of the opt-in system are recognised, the majority felt that there is scope to make improvements without changing legislation
· The importance of making an informed, personal choice was a strong theme, raised in many interviews. No interviewees described donating, or refusing to donate, as a fundamental condition of their faith or belief. Instead, it was considered that donating is a decision for the individual to make. This was considered to be a key advantage of the current opt-in system, and there was some concern that an opt-out system may remove this freedom of choice
· If an opt-out system were introduced, it would only be acceptable for most if the ‘soft’ opt-out system were used, whereby even if a person has not opted out, their organs will not be used if there are objections from a relative
· If the opt-in system is retained, most interviewees recommended creating an awareness and engagement campaign to encourage people to opt in. If an opt-out were introduced, an extensive awareness campaign was considered to be essential
· It was felt that a much greater level of engagement is needed, as organ donation is currently not a priority for many faith and belief groups. There is a need for engagement at local levels in particular, and the route to these communities is often, although not exclusively, via the organisations represented here. It is important to note that there are likely resource implications for this
· Interviewees stressed that ongoing debate was required, and all welcomed the opportunity for ongoing discussion about organ donation
· Diverse views on organ donation exist even within faith groups
· According to interviewees, the majority of faith and belief groups covered tend to allow organ donation
· Whilst the majority of faith and belief groups permit organ donation, and some even have core beliefs which support it, religion was not described as a key influence for people opting in
· The definition of death as brain stem death is an issue in some quarters across a range of faith and belief groups
· Small numbers within different faith and belief groups may have specific objections to the receiving or donating of organs
· Many expressed the view that the decision to donate is a choice for the individual to make, and some felt that it is important to ensure that organs are donated under conditions of informed consent, and not received through trafficking from less developed countries, or from those who have been exploited
· There was recognition that the feelings and wishes of the families must be taken into account
· The majority of interviewees were positive towards the current opt-in system
· Its key advantage was considered to be that it allows for free choice, and ensures that organs have been donated under conditions of informed consent
· There was recognition that the current system is currently not providing enough organ donors to meet demand, because organ donation is not a priority for most people
· It was also mentioned that there is a reluctance to opt in within some communities, due to a fear that they may receive inferior medical treatment as a result of being on the register
· A further complication raised is that donors do not always inform their families of their wish to donate organs, which can lead to difficult discussions at death
· The majority of interviewees felt that increasing awareness of organ donation and the opt-in scheme will have a positive impact
· Some suggested that there is a need to make opting in simpler and to provide more information about the ways that people can join the register
· One interviewee mentioned a need to increase the transplant coordinator network and for the medical parties involved to be ‘in sync’ with one another
· Whilst recognising the shortcomings of the opt-in system, the majority of interviewees felt that there is scope to increase the number of donations without a change in legislation
· The majority of interviewees are opposed to the introduction of an opt-out system. Only three are in favour of a change in legislation, and a further three mentioned no objections with either system
· One key concern expressed by interviewees is that the opt-out system would not allow for personal choice. Whilst some felt that allowing people to opt out does provide a choice, many others were concerned about the difficulty in establishing whether the donor has made an informed decision to donate
· There was particular concern that certain ‘hard-to-reach’ audiences would not have the information needed to opt out, or that people would simply forget
· There was also a view that introducing the opt-out system is a lazy way to get more organs, and that it may make people feel uncomfortable about opting out
· Many interviewees felt that the opt-out system would alter the relationship between state and individual, and expressed unease about this. It is felt that this system would give the government a level of control which could be abused
· Some also felt that assuming that organs can be used when they have not actively been donated is dehumanising
· Some suggested that introducing opt-out could trigger a backlash in communities
· The majority of interviewees assumed that the opt-out system would result in more organs being available, and saw this as the key, and in many cases, the only advantage
· If opt-out were introduced, most felt that the ‘soft’ model, whereby organs are not used if relatives object, would have to be used. It would also have to be ensured that the family were not inconvenienced in any way
· In the case of a change in legislation, it was agreed that a lot of work would need to be done to ensure that everyone knew about the system, and how to opt out. It would also be important to ensure that people were not made to feel uncomfortable about opting out
Organ donation is a complex issue for many faith and belief groups
Interviewees were keen to stress that there is a broad spectrum of opinions on organ transplantation within each faith and belief group, and that consequently it is difficult to speak on behalf of an entire group.
One complication mentioned by interviewees is that as organ transplantation is a relatively new medical procedure, there is no explicit reference to it in many original religious texts. Consequently positions on the receipt and donation of organs are based on interpretation.
“The texts were written at the time of the
gurus... there wasn’t any discussion about it in those times” (Dr Indarjit
Singh, Network of Sikh Organisations
“There are no explicit references to organ donation in the texts” (Malcolm M. Deboo, The Zoroastrian Trust Funds of Europe Incorporated)
Furthermore, it was highlighted that some objections to organ donation for particular faith and belief groups may not arise from the religion itself, but from cultural beliefs.
It seems that knowledge of organ donation, and the position of one’s own faith or belief group towards it, is low in some communities, and extends even to religious leaders, possibly because it is currently not high on the agenda for many groups.
“If you spoke to Sikhs on the street, you
would get a whole mix of responses, because there is quite a lot of ignorance
about the religion itself” (Dr Indarjit Singh, Network of Sikh Organisations
“Generally the Hindus do not know all the
doctrines of the Hindu Dharma, the spiritual core of their religious
contents. If you asked a common Hindu about any specific issue like the
present one, they might want you to check with professionals” (Dr H. V. S.
Shastry, Hindu Council
“The representatives of the community, even in the religious sphere, are not necessarily trained in religious doctrine” (Jasdev Singh Rai, British Sikh Consultative Forum)
“If they (consult a priest), the priest
would probably not be that familiar with the issue (organ donation)” (David
Jones, Catholic Bishops’ Conference of
Finally, it was mentioned that views on organ donation can change when people are confronted with death.
“The default option moves to the ‘religious right’ close to death. People who may not be that observant will suddenly become very observant” (David Katz, Board of Deputies of British Jews)
The majority opinion in most faith and belief groups tends to allow organ donation
The majority of interviewees stated that the majority opinion in their faith or belief group is to permit organ donation, with some actively supporting it.
“There is no objection to Baha'is either donating
their organs or receiving donated organs” (Barney Leith, Baha'i Community of
the
“Hinduism has always supported organ
donation” (Dr H. V. S. Shastry, Hindu Council
“There is no particular Jewish position on receiving organs. The question is whether the procedure has been validated and shown to be worthwhile and useful in terms of saving and preserving life” (David Katz, Board of Deputies of British Jews)
Many also referred to particular principles of their faith or belief that support organ donation.
“The principle of giving and helping others
is understood and applauded” (Dr Indarjit Singh, Network of Sikh
Organisations
“We have a commission to seek health and healing” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
“The objective for Jains is to live and to help others to live” (Dr Natubhai Shah, Jain Network)
“The Humanist view is that we only have one life, and therefore it should be as good, fulfilling, healthy and happy as possible. Receiving an organ is life-improving, and therefore seen as positive” (Naomi Phillips, British Humanist Association)
“Preservation of life is considered to be
important, and most Hindus welcome the concept of organ donation” (Hindu
Forum of
“Many references support the concept of
organ donation in Hindu scriptures. ‘Daan’ is the original word in
Sanskrit for donation meaning selfless giving. In the list of the ten
‘Niyamas’ (virtuous acts), ‘Daan’ comes third” (Dr Raj Pandit Sharma, Hindu
Priest Association
“Zoroastrians consider the concept of death as evil…The purpose of creation in Zoroastrianism is to assist God to defeat evil. Thus Zoroastrians see themselves as warriors of good fighting evil, therefore they are pro-life and pro-organ donation because by donating their organs another life of a warrior can be extended, who in turn will continue to fight the good battle against evil” (Malcolm M. Deboo, The Zoroastrian Trust Funds of Europe Incorporated)
Interviewees described a divergence of opinion within the Muslim community, with some scholars permitting, and some forbidding, organ donation.
“I must stress that there is a difference of opinion amongst scholars on this issue” (Mohammed Umar, Ramadhan Foundation)
“There are different views, a wide diversity, within Islam on these issues” (Khurshid Ahmed, British Muslim Forum)
One interviewee stated that where organ donation is forbidden, this is for the following reasons:
“(It is forbidden) firstly because when an
organ has been removed from the body it is deemed to be impure. Secondly,
because of the honour and dignity that is due to man” (Mufti Zubair Butt,
Muslim Council of
Another interviewee said that he was unaware of any religious objections to organ donation, but emphasised that he was not an expert on Islamic law.
“I would think that preservation of life is just as important in the Islamic faith as it is in other faiths, therefore donation and receipt would be perfectly permissible… (I am) not aware of anything in Islam which would prohibit the donation of organs” (Khurshid Ahmed, British Muslim Forum)
Grass-roots perceptions that organ donation is forbidden exist even where the faith or belief allows it
Two interviewees from the Muslim community mentioned a perception at grass-roots level that organ donation is not permitted even where scholars have permitted it.
“The majority of Muslim scholars have now given the opinion that it (organ donation) is permissible. It is about educating the grass-roots people” (Mohammed Umar, The Ramadhan Foundation)
“There is a very strong perception in that
community (which the majority of Muslims in the
A further interviewee from the Hindu community mentioned that an uncertainty at grass-roots level about whether Hinduism allows organ donation results in people choosing not to donate.
“They are not sure; so, to be on the safer
side, they might say no to donate” (Dr H. V. S. Shastry, Hindu Council
Faiths or beliefs may not be key drivers of personal decisions about organ donation
It is interesting to note that whilst interviewees stated that the majority of faith and belief groups do not forbid organ donation, they also do not appear to actively encourage it. Faith or beliefs were not described as a key driver for people to opt in.
“In reality, the current situation is a long
way from ministers telling their communities it (organ donation) is a ‘good
thing’” (Bishop Joe Aldred, Churches Together in
On the other hand, another interviewee did not feel that faith is a key reason for people not to opt in.
“The hypothesis is that this is due to religious scruples in the Jewish and Muslim communities, but I am not sure that this is correct” (David Katz, Board of Deputies of British Jews)
The definition and diagnosis of death is problematic for some faith and belief groups
Whilst the majority view permits organ donation, a number of concerns were mentioned.
The definition of death is controversial for some, with interviewees reflecting scepticism about brain stem death in some quarters of Buddhist, Christian and Jewish communities.
“The issue of brain stem death is still highly controversial amongst those who interpret Jewish law” (David Katz, Board of Deputies of British Jews)
“There is an anxiety in some quarters that
hasn’t surfaced, but is bubbling under the surface, and that is about the
definition of death” (David Jones, Catholic Bishops’ Conference of
“One particular Tibetan group had great unease about the disturbing of the body in the hours after death (or what in Western medicine would be recognised as death) and would dispute the definition of brain stem death” (Sally Masheder, Network of Buddhist Organisations)
Concern about the diagnosis of death for some people within Christian and Sikh communities was also reflected.
“There is an underlying concern about the
medical expertise in determining whether someone has died, or can no longer
live, and how fully this is considered by doctors” (Dr Indarjit Singh,
Network of Sikh Organisations
Members of some faith and belief groups may have particular objections to organ donation
Concern about interrupting a cycle
One interviewee mentioned that some Hindus may have concerns about receiving or donating an organ as this could interrupt the cycle of reincarnation.
“By passing your organs on and prolonging
another life and therefore interrupting the cycle (of reincarnation) that
Hindus believe in, there could be some issues for some people. The religion
would not tell people that it is against organ donation, but it would say
that there may be implications for the person living or dying” (Raj
Bharkhada, Hindu Forum of
Another respondent from the Hindu community mentioned a belief amongst some that if they donate an organ in this life, they cannot be liberated from the cycle of reincarnation until it is returned, but considered this view to be erroneous.
“A minority of misinformed Hindus assert that if an individual should donate an organ such as a liver in one life, then they would have to return in another to be repaid the favour by the recipient. This notion is erroneous and though the belief in ‘karma’, or cause and effect, means that our actions in one existence may have repercussions in the next, this single altruistic act of ‘jeevan daan’ (the gift of a life) would verily grant success towards ‘moksha’ or liberation from the cycle of birth, death and rebirth for the willing donor” (Dr Raj Pandit Sharma, Hindu Priest Association UK and Hindu Council UK)
Reluctance to prolong life artificially
Some interviewees mentioned that members of some faith and belief groups may not wish to receive an organ as this would prolong their lives.
“A strong oral culture of divine healing (in
Black Majority Churches) would impact on many people’s views” (Bishop Joe
Aldred, Churches Together in
“Many of the more profound practitioners of Buddhism would not seek to extend their lives by the receipt of organs… on the grounds that the life they have led is the life they have led, and the death they will die is the death they will die” (Sally Masheder, Network of Buddhist Organisations)
The body must remain intact after death
Interviewees mentioned that small numbers of particular faith and belief groups believe that the body needs to remain intact after death.
One interviewee stated that some Zoroastrians
would believe that donating organs means that your body will be without them
during resurrection. An interviewee from the Buddhist community stated that
in
One interviewee from the Hindu community mentioned that the belief that the body must be cremated intact is one reason for families refusing to give consent for the organs of relatives to be donated.
“When a body is cremated they (the family) want all the body parts to be intact; unless they are convinced that there is a sanction in their scripture they might object to the removal of any part” (Dr H. V. S. Shastry, Hindu Council UK)
Finally, one interviewee highlighted that this a complex issue for some parts of the Jewish community. The interviewee explained that according to Jewish law, the body should not be disturbed after death, but that there is recognition that there are circumstances in which the body cannot be left intact.
“Any interference with a body after death is
regarded as disrespectful and is contrary to Jewish law. It is however
accepted that there will be, at times, circumstances when the cause of death has
to be further investigated. At such times the type of autopsy should be
as limited as possible and carefully selected to avoid unnecessary
invasive techniques” (Draft Legislative Programme about Death Certification:
Jewish Community Response, David Katz, Eleanor
The interviewee also referred to a lecture he has given on Judaism and Transplantation in which he mentioned the need to balance the respect due to the body after death with the concern for saving lives (‘pikuach nefesh’).
However, the same interviewee also explained that some members of the Jewish community believe that the body must remain intact because some organs are needed for resurrection. According to the interviewee, this belief is inaccurate. However, the interviewee mentioned a view that if disturbing the body will cause great distress for the family, then attempts should be made to avoid it.
“The classic objection which is often expressed by Jews is that all organs are needed for eventual resurrection. This was not accepted even in Talmudic times, as it is clear that soft tissues are not required for this. However, there is a view (linked to the autopsy controversy) that if it will cause enormous amounts of distress, upset and emotional anguish for the family if an autopsy takes place, then you should try avoid it. By default this is then applied to the transplantation of organs as well” (David Katz, Board of Deputies of British Jews)
Issues around the timeframe in which a death ceremony must be held, or the body disposed of, were also raised. One interviewee said that some Hindus believe that the death ceremony needs to be held within 12 hours of death, and another interviewee mentioned that some Zoroastrians believe that the body must be disposed of on the same day as death occurs, or at the latest by dawn on the third day after death.
Another interviewee mentioned that in the Jewish community, the body should be buried either on the day of death, or on the following day.
“Burial / disposal should take place as
quickly as possible. The norm for the Jewish Burial Societies is to bury
on the day of death or if that is not practicable, on the following day”
(Draft Legislative Programme about Death Certification: Jewish Community
Response, David Katz, Eleanor
Finally, according to a further interviewee, for the Baha’i community, it is important that the body is not carried more than one hour's journey from the place of death.
Taking an organ is taking a soul
An interviewee representing the Sikh community reflected some concerns within the Sikh community that taking an organ is taking the soul. However, the interviewee stated that this argument is not supported by religion.
Concern about transplanting certain organs
One interviewee said that whilst the Catholic community supports organ donation in general, there may be concerns about the possibility of brain and gonad transplantation, and that some issues regarding face transplantation have been raised.
Some double standards
There were also three mentions of double standards, with people being more likely to question their religion’s position on donating than receiving.
“Human nature being what it is, when it comes to receiving an organ, I have not come across anyone who would ask for an opinion… when it comes to giving an organ, that is when an opinion is asked for” (Mufti Zubair Butt, Muslim Council of Britain)
“(Hindus want to have organ donation) but when you ask them to donate, they are not sure because it requires to be examined by the experts of all the skill and experience involved in this debate” (Dr H. V. S. Shastry, Hindu Council UK)
Personal choice is important
It was felt strongly across faith and belief groups that organ donation is a personal choice.
“Baha'is are free to volunteer to become organ donors, should they wish
to do so, or to refrain from doing this. It is a matter of individual
choice” (Barney Leith, Baha'i Community of
the
“The idea of options and free choice is very
important to Christianity” (Bishop Joe Aldred, Churches Together in
“One condition is that it needs to be an informed, personal decision” (Naomi Phillips, British Humanist Association)
Some expressed the view that it is important that organs are donated in conditions of informed consent, and have been acquired honestly.
“From the reformed churches point of view
the key is about how do you ensure each individual has the right information
to make an informed choice” (Reverend Debbie Hodge, Churches Together in
“There is still an issue about exploitation”
(David Jones, Catholic Bishops’ Conference of
“Organs should be donated voluntarily, and not trafficked from less developed countries. It is also important that the organs are healthy and free from disease” (Naomi Phillips, British Humanist Association)
The wishes of relatives must be respected
It was also recognised that the feelings and wishes of families need to be taken into account.
“It is also important to consider the feelings of relatives. You need to be considerate towards the living, and this includes relatives” (Naomi Phillips, British Humanist Association)
In a letter to the House of Lords Select Committee from the Board of Deputies of British Jews, the need to honour family wishes is also mentioned.
“The family must be reassured that they will be able to observe the principles of honouring the dead – ‘kavod hamet’; to bury the donor in a Jewish cemetery as soon as possible after donation; and to take organs donated and not used (or rejected), for suitable burial”
Other objections to organ donation, which are not related to faith or beliefs, were also mentioned
Some interviewees recognised that some people will not donate because they are squeamish about donating organs.
“There is a certain “yuck” factor for some people” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
One interviewee also mentioned some fears about operations being unsuccessful.
“There is a degree of fear in the black
community over the failure rate of some transplants, although on the whole
individuals generally opt for interventions that help to extend life” (Sharon
Platt-McDonald,
4.3.Views on the current opt-in system
The majority of interviewees support the opt-in system as it respects individual choice
The majority of interviewees that took part in this study are supportive of the current opt-in system.
“Would advocate the current system” (Sally Masheder, Network of Buddhist Organisations)
“The voluntary system is the ideal. It is a much better system than others” (David Katz, Board of Deputies of British Jews)
The key advantage of this system was felt to be that it allows for free choice, and ensures that organs have been donated with informed consent. This system was also considered to be aligned with the concept of the ‘gift relationship’, which was referenced by interviewees in the Christian community.
“The benefit is that it is a more informed decision and doesn’t put the person in a quandary” (Jasdev Singh Rai, British Sikh Consultative Forum)
“The question is of personal autonomy, and
being able to make decisions for yourself. So for
me, we should stay with the opt-in” (Mufti Zubair Butt, Muslim Council of
“Advantage is that people have choice, and I think that if there are some deeply held religious views that the body or organs should not be tampered with, then I suppose it is an issue of human rights laws that they should have that right to refuse to donate” (Khurshid Ahmed, British Muslim Forum)
Despite the support for the opt-in system, there was widespread recognition of its shortcomings. In particular, many acknowledged that the opt-in system is not providing enough donors.
“The disadvantage of the opt-in system is that there aren’t enough organs” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
“Suspect the disadvantage is that there is a shortage of organs” (Sally Masheder, Network of Buddhist Organisations)
“Opt-in is a good system however as there is a shortage of donors this needs to be reviewed” (Malcolm M. Deboo, The Zoroastrian Trust Funds of Europe Incorporated)
“The only disadvantage I would see is that if you leave it to choice then you may not get the required type of organ at the right time. So the supply would obviously be restricted” (Khurshid Ahmed, British Muslim Forum)
One reason suggested is that organ donation is not a priority for many people, and consequently they are not proactive about it.
“It takes a certain amount of moral reflection and active steps to be taken, which is more than most people are prepared to do” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
“The BHA view is that it is good that we have a system but that the current system isn’t good enough, because not enough people think or talk about organ donation, or what happens to their body when they die” (Naomi Phillips, British Humanist Association)
With this in mind, some felt that the current system does not send out as strong a message as is necessary.
“People don’t automatically think about
opting in. It’s not as strong a message as road tax or getting a TV license.
You have to opt in to do both of these, and make a positive move to do them
but there are incentives to ensure you do” (Reverend Debbie Hodge, Churches
Together in
Some people do not opt in because of fears that they will receive inferior medical treatment if they are on the list
Some interviewees mentioned that some people do not opt in because of fears that they will receive different medical treatment, or be allowed to die, if they are on the register.
“Have come across people who have said, ‘I don’t want to be an organ donor because they will kill me to get my organs’” (Jasdev Singh Rai, British Sikh Consultative Forum)
“The fear is that being on the register
means your death may be hastened by a clinician” (Reverend Katei Kirby,
African
“One view within the faith could be that doctors will not save you if they know you are an organ donor” (Malcolm M. Deboo, Zoroastrian Trust Funds of Europe Incorporated)
Two interviewees mentioned that whilst individuals opt in, it is the families who ultimately decide whether or not their wishes are carried out.
“Three quarters of people who donate their
organs are not on the register, but donate because their family has given
consent. It is via conversation with the relatives” (David Jones,
Catholic Bishops’ Conference of
“The donor does not participate in the decision at the time: in Jewish religious terms, the (potential) ‘mitzva’ – obligation – lies with the family, who are the agents of its fulfilment” (David Katz, Board of Deputies of British Jews, in a presentation to UK Transplant in 2004)
However, one interviewee mentioned that in some cases, people opt in, but do not discuss their wishes with their families, which can lead to difficulties after death.
“Because people don’t discuss it with their families, when relatives are asked what the deceased would have wanted, they don’t know what to say” (Naomi Phillips, British Humanist Association)
“Many people may have a donor card but
others in the family are not aware of this and this can present issues”
(Reverend Debbie Hodge, Churches Together in
It was highlighted that discussions with relatives about organ donation need to be handled sensitively.
“At death is a difficult time to be asked
about your relative’s organs – think this need to be looked at” (Bishop Joe
Aldred, Churches Together in
However, the majority felt that the opt-in system has not yet been pushed hard enough
Despite the shortcomings mentioned, the majority view was that the number of donors can be increased without changing the law. There is a sense that opt-in has not yet been given a full chance, and therefore cannot be considered to have failed.
“Why do we have to go through a process that provokes a profound sense of unease, when other routes of recruitment have not been pushed as hard as they might?” (Sally Masheder, Network of Buddhist Organisations)
“It hasn’t brought enough organs, but is the
answer to move to the other extreme? I’m not sure it is” (Mufti Zubair Butt,
Muslim Council of
A further interview considered the question of a change in legislation to be premature, as opt-in has not been given a ‘full trial’.
Only the minority felt that the opt-in system needs to be replaced.
“The current system isn’t good enough” (Naomi Phillips, British Humanist Association)
“If the ultimate aim is to save life then we should review this system” (Malcolm M. Deboo, The Zoroastrian Trust Funds of Europe Incorporated)
Interviewees suggested a number of ways to increase the success of the opt-in system.
The majority felt strongly that awareness of organ donation, and the current opt-in system, needs to be increased, and that more needs to be done to inform and educate people about it.
“We are not convinced that sufficient has been done in terms of education and encouragement to opt in. I can’t remember the last time I saw anything urging me to opt in. In the past you could pick up donor cards almost anywhere” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
“Transplants are now much more common and we
need to ensure communications reflect changes in technology and medical
advances” (Reverend Debbie Hodge, Churches Together in
“Education processes also need to be looked
at, especially access to education about organ donation for those who are
harder to reach” (Reverend Debbie Hodge, Churches Together in
A public campaign was considered to be an effective way to do this.
“Would have thought that a much more active promotion campaign with people asking people questions could be effective” (Sally Masheder, Network of Buddhist Organisations)
“If there was a good information campaign, the government wouldn’t have to pass legislation to take everybody’s organs” (Jasdev Singh Rai, British Sikh Consultative Forum)
“There should be a more vigorous campaign to impress upon people the need to donate and people should be encouraged much more strongly than they are at the moment” (Khurshid Ahmed, British Muslim Forum)
It was also felt that it needs a higher profile in the media.
“When you get something in the television or in the press, then it gets in to the public consciousness” (Bryan Appleyard, Buddhist Society)
One interviewee suggested that in communities where people are not opting in due to a mistaken perception that organ donation is forbidden, faith communities have a role to play in correcting these perceptions, and highlighting religious principles that would support organ donation.
“If there are no strictly religious reasons why people should not donate, then I think it is incumbent upon those faith communities to have an internal, intra-community campaign to get people out of the mindset that their religion or faith would prohibit them from donating their organs” (Khurshid Ahmed, British Muslim Forum)
“Maybe there are even religious reasons for campaigning. Certainly most, if not all, religions would encourage people to save lives. There may well be aspects of their scriptures which could be interpreted to encourage people to donate. Maybe those should be used as levers to get people to donate” (Khurshid Ahmed, British Muslim Forum)
Further details of suggestions on how a higher take-up of the opt-in system could be encouraged are available on request.
It was also felt that supplying more information about organ donation would be helpful.
“Make it clear in what circumstances it is desirable to collect organs, and in which it is not. For example, if you are over a certain age can your organs still be used?” (Sally Masheder, Network of Buddhist Organisations)
“Fear that lots of people don’t know the
statistics. If that, and other information were clearer then the current
system could work better” (Bishop Joe Aldred, Churches Together in
B. We could make it easier for people to opt in
Some interviewees felt that the process of opting in is currently too complex.
“I don’t think that… people really know how to go about it. You have to have the phone number, or visit the website. You can’t just pop into a hospital somewhere. How many people know of these contact points?” (Bryan Appleyard, Buddhist Society)
“Must encourage people to grasp the moment, to make it really easy for them. Need to enable people to do it without it being a major decision that you need to plan for” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
Particular issues mentioned were older people not being computer-literate, and people losing donor cards.
C. The logistics of donation could be improved
Some interviewees suggested that the process itself might be improved.
“There is an urgent need to increase the transplant coordinator network. The Spanish experience makes it clear that whatever the legislative framework, increased (numbers of) well-trained transplant co-ordinators are essential” (David Katz, Board of Deputies of British Jews)
“There are three medical parties: the recipients, the donors and the transplanters. They need to be ‘in sync’ with one another and trained properly together” (David Katz, Board of Deputies of British Jews)
4.4.Views on the idea of an opt-out system
The majority are opposed to the introduction of an opt-out system
The majority view amongst interviewees is against a change in legislation. Some are only slightly opposed, whereas some expressed strong opposition to the opt-out system.
“I think presumed consent is quite
problematic” (Mufti Zubair Butt, Muslim Council of
“It would be better to prevent legislation at this point” (David Katz, Board of Deputies of British Jews)
It is further stated in a letter from the Board of Deputies of British Jews to the House of Lords Select Committee that:
“A change to the system of presumed consent would not be acceptable, as it would change the climate of the donation process radically”
Only three interviewees are in favour of moving towards an opt-out system, and a further three interviewees expressed no objection to either system.
“I would prefer the new law, where they have
to opt out” (Dr H. V. S. Shastry, Hindu Council
Opt-out is seen to remove personal choice
A number of concerns about the opt-out system were expressed.
Many interviewees felt strongly that organ donation should be a personal choice, and consequently there was widespread concern that using the opt-out model, people would no longer be making an individual, conscious choice to opt in. In particular, the ‘gift relationship’ does not apply under a presumed consent system.
“The gift relationship is a very important point in Christianity. The gift of what we have to others is at the heart of what we believe. But a gift where you have no say whether you give it or not, is not quite a gift” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
“Individual choice must be the first consideration. The idea that organs could be taken without permission is very worrying” (Ramesh Majithia, National Council of Hindu Temples)
Some interviewees recognised that the opt-out system does still offer choice, in that people would still be able to opt out.
“Of course, the new ‘opt-out’ policy proposed by the Government will allow anyone not wishing to have their organs donated in the event of their death to exercise this right” (Dr Raj Pandit Sharma, Hindu Priest Association UK and Hindu Council UK)
“In a way it is still a voluntary system. You still have the right to refusal, there is still free will” (Bryan Appleyard, Buddhist Society)
“That (an opt-out system) also goes some way in meeting that requirement of choice, that if people have been given the information that their organs would be removed, unless they have themselves expressed the wish for them not to be, then that would comply with the human rights issue” (Khurshid Ahmed, British Muslim Forum)
Nonetheless, many were concerned about the difficulty in establishing whether the donor has consciously decided not to opt out, or whether they were simply unaware of the system, or had not yet had an opportunity to opt out.
“How do we know it’s been done with
appropriate and informed consent? If it is opt-in, then consent is there
automatically” (Reverend Debbie Hodge, Churches Together in
“Those who are harder to reach may not have
the information or knowledge to opt out and make an informed choice”
(Reverend Debbie Hodge, Churches Together in
“Being able to opt out is not enough,
because there is a lot of ignorance, and people don’t think about these
things until there is a point of crisis for them or their family. It is not
quite the same” (Dr Indarjit Singh, Network of Sikh Organisations
One interviewee mentioned concerns that people with a limited knowledge of the English language could give consent for a relative’s organs to be donated, without fully understanding what they were agreeing to.
“The partner can’t speak English, and the
hospital struggles to get an interpreter in quick enough. The partner could
end up agreeing to donation without knowing what they are agreeing to” (Raj
Bharkhada, Hindu Forum of
Another interviewee felt that consent needs to be given explicitly.
“We would assume that the majority of people
in this country would want medical intervention, but when it comes to medical
intervention we ask for their specific consent. To totally reverse that,
because we can’t find the organs we need, is problematic” (Mufti Zubair Butt,
Muslim Council of
Consequently some felt that this system would also have quite a high potential for error – either where a family objects once an organ has been taken, or where an organ is taken, and it subsequently becomes apparent that the deceased did not wish to donate, or had changed their mind.
“There is a real danger that people’s organs would be taken that would object, and that you will find out later that they did object, and this will be upsetting” (David Jones, Catholic Bishops’ Conference of England and Wales)
“A presumption should be provisional. But
here there is no reversal. Once you have taken an organ you cannot put it
back” (Mufti Zubair Butt, Muslim Council of
However one interviewee disagreed with this opinion, and felt that if the change in law is widely publicised, then it can be assumed that those who have not opted out are willing to donate.
”If it has been made known to the individual that their organs will be removed, if the law of the land is that, then ignorance of the law is not a defence. If that is the law and it has been promoted, then one has to assume that they would have wished their organs to be removed” (Khurshid Ahmed, British Muslim Forum)
Some felt that an opt-out system would put a burden on the individual rather than the state
Some felt that opt-out is a way for government to shift the burden of activity on the individual, and be ‘lazy’.
“The whole thing is a failure of information to the public. It is the government being very lazy and saying ‘we will take your organs unless you opt out’” (Jasdev Singh Rai, British Sikh Consultative Forum)
“It places the burden on the individual to
let their wishes be known, rather than on the state” (Mufti Zubair Butt,
Muslim Council of
There was even a suggestion that the opt-out system would be reliant on people forgetting to opt out.
“What system would you put in place to
determine that someone would not have objected? To know that they consciously
decided not to opt out? I don’t think you can do that. It would appear that
people just hope that people won’t get round to it (opting out)” (Mufti
Zubair Butt, Muslim Council of
There is also a sense that this system may make people feel uncomfortable about opting out.
“It would sound a bit selfish to say ‘I want to opt out’. It creates a climate in which opting out seems a bit anti-social and selfish. Wouldn’t want this sort of pressure on people” (Jasdev Singh Rai, British Sikh Consultative Forum)
Unease about a perceived shift between the state and the individual
Many felt that a move to an opt-out system was an example of a power shift between the state and the individual. Discomfort was expressed at the level of control that this would give the government, and it was questioned whether the state has the right to claim it. It was also suggested that this power shift could damage the perception of the state.
“It’s the government becoming owners of body
parts. It would be going in a direction that many people would be unhappy
about” (Dr Indarjit Singh, Network of Sikh Organisations
“If we move to an opt-out system, there is a change in the relationship between the individual and the state. The assumption about whose body it is begins to move” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
“Does the state have the right to make these
laws? Who gives them the right?” (Mufti Zubair Butt, Muslim Council of
“It is going to be one piece of a whole shift of people’s perception of civic duty and state power. The extent to which they feel controlled by the state or in control of the state. Whether they feel that their compliance and willingness is taken for granted or requested and earned. Whether they see government as authoritarian or liberal. And if put in the context of a number of other elements relating to state power and balance of liberal versus authoritarian view, then it contributes to a perception that is damaging to the role of the state” (Sally Masheder, Network of Buddhist Organisations)
One interviewee suggested that less people may be in favour of organ donation than the current figures suggest.
“The 70% figure that is given (of people in
favour of organ donation) may not reflect reality. ‘There is a difference
between when you ask a question in a survey and when it comes to the
practical reality of it” (Mufti Zubair Butt, Muslim Council of
One interviewee expressed a fear that this power could be abused by a future government.
“History shows us that governments can be vulnerable, and we don’t want to give a power that could be fundamentally abused” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
The erosion of trust in the medical profession was mentioned as an issue.
“The other thing to address is the erosion of trust in the medical profession over last 10 – 15 years” (Sally Masheder, Network of Buddhist Organisations)
Some concern that opt-out could reduce organs to commodities
Some felt that a presumed consent model displays a lack of respect towards individuals, and could be seen as ‘dehumanising’.
“If you assume that you can take people’s organs, then you are not paying them proper respect” (Bryan Appleyard, Buddhist Society)
“If you reduce organs to commodities to be supplied, you have begun the dehumanisation process. And you have also introduced the language of supply and demand, of economics. If supply falls below demand again, then you are justified in taking steps to rectify it… in the context of the gift relationship, supply and demand are not appropriate terms to talk about. If the supply isn’t there, unfortunately demand can’t be met” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
“If you are supposed to have respect for the
body, you are not supposed to treat it like other forms of raw materials.
What justifies it is that the giving of it is a human thing, so there is an
anxiety about it ceasing to be a human thing” (David Jones, Catholic Bishops’
Conference of
Introducing opt-out could trigger a backlash
Some interviewees felt that introducing opt-out would provoke negative reactions from a number of communities and upset a minority in a number of groups. This could lead to some organ donation sceptics becoming more vocal.
“I would think that you may see a backlash with increased opt out, not only in the Jewish community but also from other communities” (David Katz, Board of Deputies of British Jews)
“By default we could create a promotion
campaign that says ‘opt out’ and for this reason opt out is worrying”
(Reverend Katei Kirby, African
“There is a danger of people overreacting
because they see it as becoming not human anymore. This danger is not
overstated” (David Jones, Catholic Bishops’ Conference of
“It would up the stakes for people who are
sceptical. Currently those who are sceptical are happy to grumble on
sidelines. It is likely to precipitate an anti-organ transplant movement that
doesn’t exist now” (David Jones, Catholic Bishops’ Conference of
Benefits of the opt-out system were also recognised – in particular a likely increase in the number of donors
Most interviewees also recognised the advantages of introducing the opt-out system. The most frequently mentioned, and for some the only presumed benefit is that it would increase the number of organs available.
“Advantage of opt-out must be to do with
getting more organs – can’t see any other advantages” (David Jones,
Catholic Bishops’ Conference of
“The advantage of an opt-out system would be that we can get the necessary organs more quickly” (Dr Natubhai Shah, Jain Network).
“Advantage of that system (opt-out) would be that it would ensure a better level of supply of more suitable organs, and that more lives would be saved… if people have that deeply held view, they would have that choice (to opt out), and the disadvantage would be that again supply would be affected as a result of that, but at least it would be affected to a much lesser extent (than if people have to opt in)” (Khurshid Ahmed, British Muslim Forum)
One interviewee mentioned the difficulty in balancing the concerns about opt-out with the potential increase in lives saved.
“One difficulty for the Synod would be ‘how many lives are we condemning by reducing the supply and sticking with opt-in?’ But this is based on the assumption that moving to opt-out would dramatically increase the numbers” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
The submission to the House of Lords from the
“The undoubted need for more organs to be donated for the healing of others has to be weighed against the changed relationship between persons and the State which moving to an opt-out system might entail”
Opt-out could send a stronger message about organ donation
One interviewee felt that opt-out would send out a stronger message about the need to donate.
“An opt-out system would send a stronger signal out about organ donation” (Naomi Phillips, British Humanist Association)
Further benefits mentioned in the submission from the British Humanist Association to the House of Lords in January 2008 are that:
“(Opt-out) would decrease the trafficking in organs and human beings, would increase awareness of organ donation more generally and would better assist individuals and families to make decisions about organ donation”
The opt-out system could solve the question about when people should be asked about organ donation
One interviewee suggested that it could address the question of at what point people should be asked whether they want to be a donor.
“In favour personally of an opt-out system that assumes that everyone is a donor, as it would address the issue of when the question about donation should be asked” (Bishop Joe Aldred, Churches Together in England)
However, it would not remove the need to discuss organ donation with relatives
Another interviewee questioned whether it would remove the need to discuss donation with family members at the point of death, but concluded that it would not.
“Would opt-out make it easier because you
wouldn’t need this conversation? No, because you would still have to speak to
the relatives” (David Jones, Catholic Bishops’ Conference of
And another interviewee suggested that it would make the situation worse.
“It would lead to debate among family members about whether the organs should be donated and what the person really wanted. If you have a voluntary donation, then someone has said ‘I want to donate my organs’, and it has a bigger impact. There isn’t that dispute amongst the family, because he himself wanted to do it” (Mohammed Umar, The Ramadhan Foundation)
If an opt-out system were introduced, certain conditions would need to be in place
As stated earlier, the majority of interviewees expressed a preference to continue with the existing system rather than introducing opt-out. If, however, the opt-out system were to be introduced, it was felt strongly that certain conditions would need to be in place.
The ‘soft’ presumed consent model would have to be used
It was felt that the ‘soft’ opt-out system, whereby organs are not donated if the relatives object strongly, would have to be used.
“I suppose that would possibly make it acceptable, in so far as for those people for whom there is the belief about consciousness remaining with the body, the family could veto it” (Sally Masheder, Network of Buddhist Organisations)
“If opt out were introduced, the family must still have a say and be asked for their views” (Ramesh Majithia, National Council of Hindu Temples)
“The BHA supports a ‘soft’ system of presumed consent, whereby even if the deceased has not opted out, their organs will not be used if relatives have strong objections” (Naomi Phillips, British Humanist Association)
“Definitely, the family has invariably to be
consulted. The beliefs of the family are very personal and need to be
consulted” (Dr H. V. S. Shastry, Hindu Council
However one interviewee who was against the introduction of the opt-out system felt that the ‘soft’ presumed consent model has so many caveats that it is difficult to see the difference from the present situation.
And a further interviewee felt that family members should not be able to challenge an individual’s decision to opt out, or not to opt out.
“I think if the individual has made the decision to opt out, that should be the individual’s decision, and it should not be challengeable by other members of the family… I don’t think the family should have that right (to stop organs from being removed if the person has not opted out)” (Khurshid Ahmed, British Muslim Forum)
In order for it to be acceptable, it was felt that the family would not have to be inconvenienced in any way, for example by being made to wait longer than desired for the funeral to take place. And in the Jewish community, each death would still have to be considered individually, with consultation with the family, who will in turn often wish to consult their Rabbinic authority.
Ensuring that everyone was aware of the new system, and the need to opt out, would be critical
Many interviewees felt strongly that an engagement and awareness campaign, targeting hard-to-reach audiences in particular, would be essential in order to ensure that everyone was aware of the change, and that everyone knew how to opt out.
“If you are going to take an opt-out position, then you must ensure that people are well informed” (Jasdev Singh Rai, British Sikh Consultative Forum)
“One consideration is that public awareness would have to be very high” (Naomi Phillips, British Humanist Association)
“If opt-out were introduced, consultation with the Hindu community would be absolutely essential” (Ramesh Majithia, National Council of Hindu Temples)
“For me that would require a person to have
sufficient knowledge of the situation, and know how to opt out” (Mufti Zubair
Butt, Muslim Council of
There was recognition by some that however extensive an awareness campaign would be, it would still not reach everybody.
“No matter how good the campaign is, not everyone will be aware of the new system. Therefore it is important that relatives are fully informed about what will happen to the body of the deceased. Those people whose job it is to question relatives about what the deceased would have wanted will need thorough training” (Naomi Phillips, British Humanist Association)
“(There are) some real concerns about lack
of access to information for those who are harder to reach especially”
(Reverend Debbie Hodge, Churches Together in
There should be no pressure for those wishing to opt out
It was also felt important to ensure that people were not asked about donation at a vulnerable time, and that it was not made embarrassing or difficult to opt out.
“If they opt out there shouldn’t be any further pressure for them” (Jasdev Singh Rai, British Sikh Consultative Forum)
“We would want the maximum safeguards in place to ensure that opting out options were offered at a point when people were not under any pressure” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
“It needs to be made easy for people to opt out” (Malcolm M. Deboo, Zoroastrian Trust Funds of Europe Incorporated)
Ensuring that legislation would have to be renewed after a set period of time could be helpful
One interviewee said that if opt-out were introduced, they would like time limits for renewal of the system to be set.
“Opting out would stand a better chance if there were time limits around the renewal of legislation, for instance if it had to be renewed every second or third year” (Dr Indarjit Singh, Network of Sikh Organisations UK)
Summary of positions on opt-in and opt-out systems
|
|
Opt-in |
Opt-out |
||||
|
|
Supportive |
No issue |
Concerns |
Supportive |
No issue |
Concerns |
|
B. Appleyard, Buddhist Society |
X |
|
|
|
|
X |
|
Dr M. Brown, Archbishop’s Council of the |
X |
|
|
|
|
X |
|
Mufti Z. Butt, Muslim Council of |
X |
|
|
|
|
X |
|
D. Jones, Catholic Bishops’ Conference of |
X |
|
|
|
|
X |
|
D. Katz, Board of Deputies of British Jews |
X |
|
|
|
|
In favour of retaining opt-in X |
|
S. Masheder, Network of Buddhist Organisations |
X |
|
|
|
|
X |
|
British Sikh Consultative Forum |
X |
|
|
|
|
X |
|
Dr I. Singh, Network of Sikh Organisations
|
X |
|
|
|
|
X |
|
M. Umar, The Ramadhan Foundation |
X |
|
|
|
|
X |
|
Black Majority Churches² |
X |
|
|
|
|
X |
|
Hindu Forum of |
X |
|
|
|
|
X |
|
B. Leith, Baha'i Community of the |
|
X |
|
|
X |
No issues with either system |
|
Dr N. Shah, Jain Network |
|
X |
|
|
X |
|
|
K. Ahmed, Muslim Forum of Britian |
|
X |
|
|
X |
|
|
Rev. D. Hodge (DH), Churches Together in |
|
|
X |
|
|
Concerns about both systems X |
|
N. Phillips, British Humanist Association |
|
|
X |
X |
|
|
|
M. M. Deboo, The Zoroastrian Trust Funds
of |
X |
|
|
X |
|
In favour of introducing opt-out |
|
Dr H. V. S. Shastry, Hindu Council |
X |
|
|
X |
|
|
¹It should be noted that whilst the representative of the Archbishop’s Council of the Church of England interviewed tended towards retaining the existing system, the submission to the House of Lords inquiry states that:
“Whether organ donation should be arranged through an ‘opt-in’ or an ‘opt-out’ system is not a question on which Christians hold a single set of views”
²This was a group meeting. One person was in favour of opt-out, with the other attendees in favour of continuing with the existing system.
4.5.Suggested approaches to long-term engagement on organ donation with faith and belief groups
It should be noted that interviewees are here expressing views about engagement on organ donation in general, regardless of whether the opt-in system is retained or the opt-out system introduced.
The approach to engagement will need to be tailored to each faith and belief group. Full details of recommendations provided for each faith and belief group are available upon request.
Many interviewees said that the organisations they were representing had had little or no contact with the ODT before this interview, but all are open to future engagement.
It was mentioned that organ donation is currently not a priority for some groups, and it is felt that the debate needs to be opened.
It was also felt that that any engagement needs to be ongoing if it is to be effective.
“Like any learning, it is not enough to hear
a lecture once… You can be inspired by one talk, but you will lose the
inspiration over time” (Dr Indarjit Singh, Network of Sikh Organisations
“Need to take two or three steps back.
Rather than saying ‘this is what we want to do, this is the opinion we want
you to have, and can you support us’, instead we need to ask them what they
think, and have a drawn out conversation. Then I think there would be
movement” (Mufti Zubair Butt, Muslim Council of
One interviewee suggested that a variety of types of communication would be needed to convey the message effectively.
“It is also very difficult to reach all
Hindus across the country; hence we would have to try many means and
measures. No one source would be enough to reach all Hindus” (Dr H. V. S.
Shastry, Hindu Council
It was felt that engaging with people at a local level via events and meetings would be most effective. It was suggested that religious centres such as churches and gurdwaras would be a good route for engagement.
“We would need to arrange local events with
national support and coordination. We would need to engage with regional
gurdwaras, or clusters of gurdwaras” (Dr Indarjit Singh, Network of Sikh
Organisations
In order to engage the Sikh community, it was also recommended that local statutory and non-statutory bodies are encouraged to work together.
Engagement via community leaders, schools, Connexions centres and Sure Start centres were also suggested.
One interviewee felt that it would be useful for Department of Health representatives to be present at these meetings, whilst another suggested that the initial approach would be best made by a faith figure.
Some interviewees mentioned an opportunity to engage with hospital chaplains.
“There are hundreds of Church of England hospital chaplains, all coordinated from the General Synod office. There is an opportunity to look at their training programmes” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
“This (multi-faith hospital chaplaincy) is an area that is growing” (Sally Masheder, Network of Buddhist Organisations)
An opportunity to engage with Catholics working in the health system was also highlighted.
“There hasn’t been a strong engagement with
this group. Has been a desire to try to do something, but very embryonic at
the moment” (David Jones, Catholic Bishops’ Conference of
There were two suggestions that GPs could help to communicate the message.
“They (GPs) can do a lot, because patients
always listen to their GP. If the GP tells someone that Hindu scriptures are
also in favour, then it would add to the conviction in general” (Dr H. V. S.
Shastry, Hindu Council
Interviewees felt that there is a need for the government to engage with the key opinion formers within faith and belief groups.
“Across the black Christian faith community
there are still key individuals who do not highly recommend organ donation
yet. One way of working through this is to engage in debate with opinion
leaders” (Sharon Platt-McDonald,
“There is a need to engage with the strict orthodox part of the Jewish community. This needs to be discussed with the doctors involved in this area and with the Rabbinic authorities that they recognise. This part of the Jewish community will have an impact on the views in the mainstream part of the community” (David Katz, Board of Deputies of British Jews)
Some felt that the government needs to be inclusive and avoid ‘cherry-picking’.
“Government has cherry picked certain ‘obedient’ scholars. This isn’t very effective at all” (Mohammed Umar, The Ramadhan Foundation)
“(Scholars from the Sunni and Deobandi
traditions) have not been engaged in debate. Would like to engage this
tradition in debate” (Mufti Zubair Butt, Muslim Council of
It was also felt that more needs to be done to reach people at grass-roots level.
“Need to engage with the community to help them spread the message about organ donation” (Dr Natubhai Shah, Jain Network)
“Dissemination of information through different tiers needs to be improved” (Malcolm M. Deboo, The Zoroastrian Trust Funds of Europe Incorporated)
”You have to go out to the grass roots and educate them” (Mohammed Umar, The Ramadhan Foundation)
One interviewee mentioned that the opinion formers would have to be approached first.
“Can’t immediately go to the grassroots without going through the leaders because you have to be very courteous” (Mohammed Umar, The Ramadhan Foundation)
One interviewee felt that it is more important to engage people outside the realm of faith.
“It needs to be considered throughout life… We learn to be moral people in churches, but also in the day-to-day running of our lives. Needs to be taken beyond the realm of faith” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
Some organisations said that they do not currently have enough funding, and that financial support from government would enable them to communicate more effectively with their respective communities. Additional resources would be used to employ more part-time staff, to respond to consultations and to produce materials.
“Organisations like the Network of Sikh
Organisations
“If Government were asking churches to engage communities, finance and resources would be helpful” (Reverend Janet Murray, Community Family Challengers Project)
“I think if the objections are more likely to come from a religious context, then faith communities should be encouraged to campaign and should be supported financially to campaign” (Khurshid Ahmed, British Muslim Forum)
4.6.Feedback
on current
As in section 4.5, the findings listed here are general themes, which were common across faith and belief groups. Detailed comments on each leaflet are available on request.
It should be noted that leaflets do not currently exist for Baha’ism, Humanism, Jainism and Zoroastrianism.
Low awareness of leaflets
Among the faith and belief communities for which leaflets have been produced, the majority of interviewees had not seen, or were unsure if they had previously seen the leaflets.
The leaflets are a valuable tool, but won’t work on their own
Many interviewees felt that there is a value in producing these leaflets, but that they are not sufficient on their own.
“Leaflets are useful, but you need to bombard people with the duty to consider organ donation” (Dr Malcolm Brown, Archbishop’s Council of the Church of England)
“People won’t take any notice of leaflets – there are so many of them” (Dr Natubhai Shah, Jain Network)
“The Muslim community does not respond to
leaflets. Must adopt a different method. Leaflets are one thing, but not the
answer” (Mufti Zubair Butt, Muslim Council of
A further interviewee commented that leaflets would not be effective unless local bodies start working together.
Mixed views on the content of leaflets
Views on the content of the leaflets varied greatly. Some were positive towards the leaflets, whilst others were more critical, with one interviewee describing the leaflet relating to their faith and belief community as ‘boring’.
“Does provide sufficient information,
provides the essence” (Dr Indarjit Singh, Network of Sikh Organisations
“This would be very useful. I wish this
would be read by all of my faith community” (Dr H. V. S. Shastry, Hindu
Council
“A number of fairly basic rules have been broken” (Sally Masheder, Network of Buddhist Organisations)
There was general agreement that the leaflets need to be updated, as in some cases people who have been quoted are no longer appropriate.
Wider involvement and endorsements could increase credibility
It was felt that more people should be involved in developing the ‘Islam and Organ Donation’ leaflet, as currently the Indian sub-continent tradition is not represented.
“Would be good to mention an organisation
from
“Haven’t really brought in wider opinion.
Need to bring in the opinion of people at grass roots level” (Mufti Zubair
Butt, Muslim Council of
One interviewee suggested that the leaflet could offer a more balanced view.
“Feels a bit like ‘now can I have your
organs please?’ They feel like you are being sold something… if this were
produced by Catholics, it would have more cautions or negatives or
qualifications” (David Jones, Catholic Bishops’ Conference of
Whilst religious leaders are quoted on some leaflets, one interviewee felt that this may not be enough to convince some members of the community, as quotes may be taken out of context. It was suggested that gaining approval from religious institutions would help to give the leaflets credibility.
Contents
Appendix 1: Discussion Guide
Appendix 2: House of Lords submissions
· What is your faith’s (or belief group’s) position on receiving organs?
o For all people
o For members of your faith (or belief) group
· Are there any conditions attached to receiving organs? What are they?
· What is the position on receiving organs at a grass roots level? Does this vary from the official positioning? How?
· What is your faith’s (or belief group’s) position on donating organs
o For all people
o For members of your faith (or belief) group
· Are there any conditions are attached to donating organs? What are they?
· What is the position on donating organs at a grass roots level? Does this vary from the official positioning? How?
B. Your views on the current opt-in system
C. You views on the idea of an opt-out system
· What would the advantages of this system be?
· What would the disadvantages of this system be?
· What impact (if any) do you think introducing this system would have on the volume of donations?
· And if it did not have this impact, how would your views change?
· Does this pose any particular issues for your faith (or belief)? What are they?
· What response would you expect to this system at a grass roots level?
· Would any conditions need to be in place? What would they be?
D. Other options to raise organ donation and transplant rates
· What other ways are there for government to raise organ donation and transplant rates (prompt for 14 recommendations)?
· What would be the advantages and disadvantages of these options?
E.
· How successful is the UK Transplant leaflet explaining your faith’s position on organ donation in terms of the following?
o Information
o Clarity
o Tone
o Provision
o Anything else
F. Long term engagement with your community
· How would you describe the current level of engagement between the Organ Donation Taskforce and your faith (or belief) community at a local level?
· How could it be improved?
· What is the best way to engage with your faith (or belief) community at a local level?
o With who?
o Via what means?
o How often?
o About what?
Appendix 2:
House of Lords submissions
It should be noted that an initial submission to the House of Lords Select
Committee was sent by David Katz on
Following this initial submission, a response was sent to the Board of Deputies of British Jews, requesting further detail on the following areas:
·
Please would
you describe any particular aspects of organ donation and transplantation
which are considered ethically problematic within the context of your organisation’s
religious beliefs—as these are perceived: (a) within the
· Please would you explain if there is any significant tendency for individuals from your faith group to oppose organ donation either for themselves or for a family member on the basis of their own interpretation of the religious teaching of the group, rather than on the basis of how that teaching is more generally interpreted. If so, how, if at all, do you think this tendency might best be addressed?
·
To what extent
would a change to a system of presumed consent for organ donation in the
·
If presumed
consent were to be introduced in the UK, what would be your views about the
idea that members of any particular groups should be assumed to be opted out
as a whole without the need for individual opt outs? (An example of this is
the case in
The letter contained in the following pages is a response to these questions.
Barry Werner
Clerk to European Union Sub – Committee G,
Committee Office,
House of Lords,
Re House of Lords inquiry into the issues raised by the European Commission Communication: organ donation and transplantation – policy actions at EU level
Dear Baroness Howarth
Thank you for your letter of 30th January asking the Board of Deputies of British Jews for further comment following our earlier submission on this subject.
Although there are four specific questions posed, which we intend to address, we also believe that there are some underlying issues raised in your letter that need to be clarified.
The impression given (last paragraph, page 1) is that, while in general both the faith groups and their religious leaders support organ donation, there are particular issues which might be of concern to some members of the faith groups, which might make them reluctant to consent; and that this is then linked to self-perception of religious law. These comments tend to diminish the role that personal faith may play in the core decision making process, and to propound the view that total subjugation to religious authority should be the norm. Ignoring the personal faith dimension, and focussing entirely upon the pragmatic issues, does not do justice to the individual and their concerns. It is strange that these assumptions are stated at this point as your “understanding”, thus prejudging the responses to question 2.
There are two other issues which these same introductory comments raise. Firstly, it is unclear where the phrase “substantial number of cases” derives. One would need to know how many realistic potential donors there are in total, and how many refusals there are from amongst each faith group. The Board has the impression from your letter that it is the most observant parts of the Jewish community from which those who refuse might be presumed to be drawn. They may also be the least affluent. It would be of interest to know whether or not a control cohort of similar financial and social status will behave in the same way. There are also potential comparative Christian, Muslim and Hindu groups in the same socio-economic cohorts. Anger at the time of the Alder Hey investigation reflected a deep-seated sense of betrayal and mistrust which was not necessarily based upon religion. In earlier discussions it was made clear to the Jewish community that there are also racial issues and that it is the Afro-Caribbean donation rate that is the lowest.
Secondly not all Jews share the same view of this issue and other matters relating to organ donation. However, although for this reason widespread consultation amongst the Jewish community may be needed, there is a documented tendency amongst Jews to revert to certain religious “norms”, when confronting death, which can be based upon misunderstandings of the religious position, but which are nonetheless sincerely held, and should not be dismissed. For example, families will insist on immediate registration of death and facilities for early funerals, and then opt for cremation. Studies of Jewish opinion document that the reason why many Jews who oppose autopsy and cremation, and presumably donation, is based on the notion that “soft tissue” body parts will be necessary in the event of resurrection of the dead, despite the fact that there is Talmudic discussion reflecting that after a period of time only bones will remain. This pattern of reversion to religion, which might occur even amongst Jews who regard themselves as secular, will have an impact on donation rates. People change when confronted with mortality, and this can act as an impetus either for or against organ donation.
In answer to your specific queries, therefore:
Question 1
Religious beliefs are those of people, not of organisations. Thus this
question is difficult, and probably inappropriate, for a representative
organisation to answer, and would perhaps be so even if that organisation
were to be composed solely of a group of synagogues. There is no
difference between the
Question 2
The problems raised by this question have been noted already above. The “solution” which would help to address this tendency (without prejudice to a decision whether or not to donate) has already been formulated, with three main principles:
1. There must be opportunity for adequate consultation with Rabbinic authorities expert in this field during the decision making process.
2. There should be suitably trained transplant co-ordinators, fully conversant with issues of concern to Jews: as noted by the Spanish authorities “the laws are necessary frameworks but they do not make organisations function……transplant organisations should be based on credibility, efficiency, impartiality and transparency”.
3. The family must be reassured that they will be able to observe the principles of honouring the dead - “kavod hamet” ; to bury the donor in a Jewish cemetery as soon as possible after donation; and to take organs donated and not used (or rejected), for suitable burial.
Question 3
In the light of the comments above, a change to a system of presumed
consent would not be acceptable, as it would change the climate of the
donation process radically. The concept of presumed consent that has been
introduced in some European jurisdictions is only accepted by orthodox Jews
because it is the law of the land, not because they regard it as the best way
to regulate transplantation. The term “presumed consent” is in such instances
factually wrong. The proposed change would not provide reassurance to the
Board that the religious rights of a very significant number of Jews in the
Question 4
This question moves entirely from issues of faith perspective to
practicality. As noted above, Jewish views are not monolithic and Jews can
change these views with time; how Jewishness is defined would be a problem;
and the opportunities for stigmatization are considerable. The Select
Committee may not be aware that the issue of religion and donation was
brought to the fore for the first time in the
Finally, in preparation of these comments, it has been very helpful to have a memorandum at hand from Mr David Frei, Registrar of the Court of the Chief Rabbi, available to us, and therefore I am also attaching this memorandum for your consideration.
I hope that these documents and comments are useful; and I reiterate my offers of undertaking further consultation and arranging additional submissions should it be necessary.
Yours sincerely
David R Katz
(Prof of Immunopathology,
(on behalf of the Board of Deputies of British Jews)
British Humanist Association
Inquiry into the EU Commission’s Communication on organ donation and transplantation: policy actions at EU level.
British Humanist Association response to the House of Lords Select Committee on the European Union’s call for evidence.
1. The British Humanist Association (BHA) welcomes the opportunity to submit evidence to the inquiry into organ donation and transplantation.
2. The BHA is the principal organisation
representing the interests of the large and growing population of ethically
concerned but non-religious people living in the
Our position
3. Humanists generally support scientists and researchers in their quest for knowledge, and support scientific and medical advances for the improvement of our health. Most of us would not object to our body parts and organs being donated and used for good ends. We believe that better public education about organ donation and transplantation is essential, and that policy actions at both state and European levels are needed in order to increase the number of organ transplants and so save lives.
4. We are also very concerned that the low number and availability of organs donated across Europe is contributing to unnecessary deaths for want of transplants and to an increased trafficking in organs, and in human beings for the purpose of removal of organs, from outside of Europe and that this will create serious ethical issues and is contributing to systematic human rights violations of some of the most vulnerable people from across the world.
5. This response is from a humanist perspective and covers in particular issues arising from that view, the health and social welfare benefits and ethical issues of organ transplantation, the use of living donors and, especially, the ‘presumed consent’ approach and the arrangements for taking into account the views of relatives. We wholly oppose general policy being made on the basis of religious dogma or superstition – though we recognise that provision must be made to accommodate the personal wishes of individuals based on such considerations – and we support policy-making based on evidence, rational decision-making and that which seeks to maximise the well-being of individuals and so society more generally.
6. With any change to the approaches for organ donation for transplantation, there must be appropriate safeguards in place to protect the wishes of the deceased individual, and the health of both living donors and those needing an organ transplantation.
Presumed consent
7. Humanists are concerned with the maximisation of well-being of individuals for the social good and benefit of society as a whole. Humanists believe in individual rights and freedoms - but believe that individual responsibility, social cooperation and mutual respect are just as important. In terms of organ donation and transplantation, most humanists would consider that we have a moral responsibility to allow our organs to be used for transplantation, if that will improve the quality of life for others and contribute to the well-being of the human family.
8. The BHA holds that the current system where individuals must ‘opt in’ to have their organs removed for donation after their death has contributed to the present shortage of organs and so to many preventable deaths every year. We fully support the replacement of the opting in approach to one of ‘presumed consent’, whereby individuals must actively opt out should they not wish their organs to be used for donation after their death.
9. The presumed consent approach would better match the fact that the majority of the population support organ donation for transplantation, would be likely to vastly increase the number and availability of organs suitable for transplantation, would decrease the trafficking in organs and human beings, would increase awareness of organ donation more generally and would better assist individuals and families to make decisions about organ donation.
10. Under the present system, unless someone has actively opted in, it is usually left to relatives to consent to donation of the deceased’s organs. There is a range of reasons why relatives may not wish the individual’s organs to be donated – historical, cultural, social, religious and so on – but these may actually have been in direct conflict with the views of the individual. Under a system of presumed consent, supported by good public information, education and awareness of that system, if an individual has particularly strong objections to organ donation after death, then she is able make her feelings clear and opt out, while she is alive. Moreover, the presumed consent system seems better able to protect the wishes of someone who had not opted-out, even if the relatives themselves have strong views against organ transplantation, because the individual should have been given good enough information to make an informed choice when she was alive and the presumed consent should usually be taken as paramount.
11. This is not to say that relatives’ views should never be taken into account. We would support the British Medical Association’s ‘soft’ system of ‘presumed consent’, whereby organ donation (for those over the age of 16) is the default position, but where relatives would not be asked to consent to donation (as in the present system), but would be told that the individual had not opted out and would be asked if they are aware of any unregistered objection1. We believe that this would help decrease the number of objections from relatives.
Living volunteers
12. The BHA would support a policy move to promote the altruistic donation of organs, such as kidneys, from living donors. As with any change to the organ donation after death system, this would need to be accompanied by raising public awareness through comprehensive education and information. If someone wishes to be a living volunteer donor, that must be an individual choice. She must have enough information to make a rational choice for herself about the risks of such a procedure to her well-being and life compared with the benefits to the well-being and health of the person needing that organ. We wholly endorse the present ban on a sale of organs.
1 British Medical Association (2007) ‘Organ donation – presumed consent for organ donation’,
October 2007. http://tinyurl.com/2yc7u9
British Humanist Association
naomi@humanism.org.uk
020 7079 3585
January 2008
BRITISH SIKH CONSULTATIVE FORUM
phone 0208 579 8898 Fax 0208 579 7439
email admin@bscf.org website www.bscf.org
Baroness Howarth of Breckland
Chairman of Sub-Committee G
European Union Committee
House of Lords
Dear
House of Lords European SubCommittee G Inquiry in Organ Donation
The British Sikh Consultative Forum (BSCF) welcomes this opportunity to contribute to the House of Lords European SubCommittee G (Social Policy and Consumer Affairs) inquiry on the European Commission Communication on Organ Donation and Transplantation COM (2007)0275.
BSCF welcomes the Commission’s proposal that European policy should concern itself primarily with guaranteeing the quality and safety of transplants and with the organization of cross-border cooperation. We welcome the recognition that the procedures for organ donation should continue to be determined by the Member States under domestic legislation. We also welcome the fact the Commission is proposing to act under Article 154 of the Treaty rather than the internal market provisions of the Treaty
From a Sikh perspective the body after death has to be respectfully handled as per Sikh customs and tradition before cremation. Organ donation is permissible with the family’s consent if the deceased has not made a prior Will. The gift of organs from living donors is also permitted with consent. Many Sikhs may freely give consent for organ donation regarding it as an act of mercy and compassion.
There can be no question of payments being made to donors and families for this act of kindness. Organ trafficking should remain illegal and we welcome the Commission’s proposal to target and stop the trade in organs. We endorse the draft report of the European Parliament Committee on the Environment, Public Health and Food Safety (2007/2210(INI) which insists that altruism must be the guiding principle of organ donation and transplantation.
We have some reservations about a system of presumed consent. We are uncomfortable with the underlying logic of presumed consent which suggests that the individual and his/her body belong to the state. We also strongly believe that a system of presumed consent would only be acceptable to the extent it does not undermine the principle of informed and freely given consent. It would therefore be necessary to put in place sensi