and Transplantation (1998)
Volume 13: 1949-1954
An Exploratory Study
Examining the Influence of Religion on Attitudes Towards Organ Donation
Among the Asian Population in Luton, UK
Currently the demand for transplant organs far outstrips
the supply in the UK. This problem is even more severe for the Asian
population who have been shown to be disproportionately greater
represented on transplant waiting lists in some regions of the UK.
Several commentators have suggested that religious and cultural
traditions may be the major determinant preventing Asians from donating
organs. An exploratory qualitative study was undertaken with the
aim to examine the influence of religious beliefs, among other things,
on the extent and direction of public attitudes towards organ donation
in a cross-section of the Asian population in Luton.
This study indicates that,
in the population studied, culture and religion play a much less
prohibitive part in determining the level of organ donation than
previously suggested. However, there is a desire to be aware of
the religious stances so that people can make a more informed decision.
The emphasis should clearly be on a reconsideration of the presently
inadequate approaches to organ procurement and on devising and supplementing
these with more appropriate ones. An example of the failure to inform
effectively the relevant populations about important developments
is that only two of the 32 Muslims in the survey had heard of the
'fatwa' by the Muslim Legislative Council permitting organ donation.
At the end of 1996, there were over 6,000 patients waiting for a
transplant in the UK.1 The vast majority
of these people will continue to wait due to the severe shortage
of donor organs. For the foreseeable future this trend is unlikely
to change unless the number of donors is dramatically increased.
This issue is even more pertinent to the UK's Asian (those originating
from the Indian subcontinent) population who have been shown to
be disproportionately greater represented on transplant waiting
lists in some regions of the UK. 2-8.
This can be attributed to the higher incidence of end-stage renal
failure as a result of increased rates of diabetes and hypertension
among Asians.2, 3, 7- 10 Additionally,
tissue type compatibility and blood group matching is more difficult
across racial groups.3, 6, 7, 8, 11
In the absence of accurate information, speculation about the factors
determining the low rate of organ procurement among the UK's Asian
population pinpoints the religious beliefs of this population as
possibly the primary influence in deterring Asian people from donating
their organs.8, 12, 13
An exploratory qualitative study was
therefore undertaken to examine the issues pertinent to organ donation,
one of which was the influence of religion, in a cross-section of
the Asian population in Luton.
The fieldwork was divided into two stages using focus group discussions
and individual interviews. Except for a pilot study conducted among
a small sample of Coventry's Sikh population carried out by Exley
et al (1996),13 this was, as far as
we are aware, the first study to tackle the issue of organ donation
among a cross-section of Asian communities. Consequently, there
were no pre-tested questions available for such a cultural setting.
The aim of the focus group discussions was to identify any sensitive
and complex issues. This information was then used to inform the
A topic guide was produced for the
group discussions in which the following areas were to be discussed:
knowledge and awareness of transplantation; views of and attitudes
towards organ donation.
Fieldworkers were recruited to conduct
the group discussions and household interviews. The essential requirements
were fluency in the relevant language, experience of socialising
in and empathy with their ethnic community, being residents of Luton,
interviewing and translating skills and experience of group work.
They were given training on conducting focus group discussions and
interviewing in the Asian context.
Bearing in mind that the group discussions
were to be conducted in Asian languages, careful thought was given
to the wording of the guide so it could be easily translated into
the relevant languages.
The study sample was selected on the
basis of language spoken and religion and to reflect the demographic
profile of the Asian population in Luton.
- Gujarati speaking Hindu women originating
from India (Indian Gujarati);
- Punjabi speaking Sikh women originating
from the Indian Punjab (Indian Punjabi);
- Punjabi speaking Muslim women originating
from Pakistan (Pakistani Punjabi);
- Sylheti speaking Muslim women
originating from Bangladesh (Bangladeshi Sylheti);
- and four, otherwise identical, groups
The group discussions
In total eight group discussions were conducted; one for each sex
within the four populations. Single-sex groups were chosen to eliminate
any inhibitions about discussing personal issues and perceptions
about the body. The criteria for selection were gender, ethnic origin,
religion, language spoken and age.
The group discussions included people
ranging from 18 to over 60 years. It was therefore essential to
have fieldworkers who were fluent in English and their mother tongue
and the discussions were conducted in both, as the need arose. Sometimes,
some parts of the discussions were immediately translated by the
fieldworker for those whose main language had not been used.14
This was viewed as a natural process to the functioning of
the group and did not disrupt the discussion. The discussions were
moderated by the fieldworkers with one of the researchers present
in a supporting role, taking part in directing the discussion if
required.15 A female researcher was
present at the female group discussions, whilst at the male group
discussions the male researcher (GR) attended.
The venues for the discussions ranged
from the University, community centre, a school and the moderators'
homes. The major determining factor for the choice of venue was
convenience for all those participating. Each of the group discussions
were tape-recorded and then transcribed into English by the fieldworkers
within a couple of days. Prior permission for recording was obtained
from all participants. The findings from these group discussions
were used to inform the household questionnaire.
Devising the questionnaire
The draft questionnaire consisted of a number of modules.
- Background to the study;
- Demographic information;
- Perceived position of religion towards
- Views concerning organ donation;
The questionnaire was developed using
the Health and Lifestyles Survey questionnaire, Black and Minority
Ethnic Groups in England - Health and Lifestyles Survey questionnaire,
and the General Household Survey questionnaire.16,
17 These questionnaires were particularly useful when devising
the format and developing the demographic information section of
the questionnaire. A major concern when considering the format of
the questionnaire was to the wording of the questionnaire so that
it could be easily translated into the relevant languages. The group
discussions were invaluable in identifying any problematic terms
or words that would have to be explained with more clarity in the
The questionnaires were piloted by each of the fieldworkers. All
the fieldworkers carried out two interviews and were asked to encourage
the respondents to be interviewed in their mother tongue in order
to make sure that the questionnaire was tested in all languages.
After this process, some of the questions were rephrased to make
their understanding clearer. Choosing the sample While conducting
a detailed qualitative study, it was nevertheless important for
us to select a sample that enabled a cross-section of views to be
The settlement pattern of Asians in
the UK has resulted in their concentration in mainly urban locations.
Within the large towns and cities the settlement has occurred in
fairly small areas. This pattern of settlement has allowed researchers
to cluster their sampling in enumeration districts, for example,
with relatively high concentrations of Asian populations.18
A similar approach was taken recently by the Health Education Authority's
Health and Lifestyles Survey.17
The concern with focused sampling is
that the survey, although broadly representative of the groups under
study, gives only a range of views of those living in areas of high
migrant settlement, who may have different social and demographic
characteristics from those in areas of low settlement.19
The important consideration is for researchers to be aware of these
limitations and their effects on the survey results.
Due to the small sample size
and exploratory nature of the study, it was decided that these were
not major impediments. The 1991 Census was used to identify four
wards in Luton which contained the highest proportion of Asians
(Biscot, Dallow, Saints and Challney respectively).
Three samples of addresses were then
drawn randomly (one for each religious group: Hindu, Muslim, and
Sikh) using the electoral register by analysis of names. The electoral
register lists for each household the names of people aged over
18 years who are UK or Commonwealth
citizens. Sampling from these registers has been used to identify
Asians for population surveys.19, 20
This method is especially useful when studying South Asians, as
Hindu, Muslim, and Sikh names are easily identifiable. A problem
with this method, however, is that it is difficult to distinguish
between Bangladeshi Muslim and Pakistani Muslim names since most
are of Arabic origin.
A wide range of different languages
are spoken by people of Asian origin, some regional languages not
having a written form.17 Regional rather
than national languages were used to conduct the interviews, the
aim being to interview people in the languages they spoke at home
to ease communication and facilitate discussion.17
The three samples based upon religion
were now subdivided in terms of language spoken. The language of
most relevance in Luton for Hindus is Gujarati; for Sikhs it is
Punjabi; and for Muslims it is Punjabi (Urdu) or Sylheti depending
on whether they are Pakistani or Bangladeshi respectively. This
gave four samples - Gujarati, Punjabi, Punjabi (Urdu), and Sylheti.
In order to distinguish between Bangladeshi and Pakistani names,
representatives from the local Bangladeshi Mosque and Pakistani
Each sample thus contained 80 addresses
of 40 men and 40 women, within which the male and female fieldworker
for each language group was to carry out the interviews. Each of
the fieldworkers was required to complete a quota of eight interviews
with a total of sixty four interviews. The selection criteria were
two respondents from each of the following age groups: 18-25, 26-40,
41-65, 65+. It was felt that this age and gender profile would give
us as broad a cross-section of views as possible within the limits
of the study.
Letters were sent out to all of the addresses selected, in both
the relevant mother-tongue and in English. These contained a short
background to the study and requested voluntary participation. The
prospective respondents were informed that a fieldworker of their
gender and speaking their language would be calling upon them in
the next few days to arrange a suitable time for an interview if
they wished to participate. All fieldworkers were provided with
a University identity card and a personal security alarm for safety
The sample was purposively selected
so as to include equal numbers of respondents from the four different
language groups: Sylheti, Gujarati, Punjabi, and Urdu. The
ethnic and linguistic spread of the sample was such that three major
religious groups were represented: Hindus, Muslims, and Sikhs. Interviews
were conducted in the respondents' first language, the interviewer
sight-translating the questions during the interview. Open-ended
responses were translated and written on to each questionnaire in
English.14 Interestingly, once face-to-face
contact had been made, there were very few refusals to participate.
It was also significant to note, contrary to some stereotypical
views of gender relationships, that the female fieldworkers encountered
no difficulties in approaching women directly in households.
Naturally, the conclusions drawn from the analysis which follows
apply to this sample alone and cannot be generalised in a straightforward
manner to the wider UK population of Asian communities. As the study
involves small and statistically unrepresentative samples,
elaborate statistical analysis of the survey findings has not been
attempted. Nonetheless, this approach highlights themes and trends
in the data, which allow speculation about the wider populations
at large. It would be possible, for example, to suggest the significance
of certain variables (e.g. language, education) in helping to understand
patterns of perception, knowledge and attitude in these populations.14
More intensive approaches also provide detail and 'richness' that
bigger surveys often lack.
The majority of respondents (38 of
the 64) said they did not know what their religion prescribed in
terms of organ donation; only most people of the Sikh faith felt
confident that their religion viewed it positively. This was not
due to any edict having been passed by but as a deduction from the
humanitarian principles taught in their faith. Twelve of the
16 Sikh respondents said they would donate their organs after death
as opposed to other groups in which indecision and a desire for
more information was expressed.
Only two of the 32 Muslim respondents
had heard of the 'fatwa' passed by the Muslim Law Council in 1995.12
Clearly the publicity campaigns which highlighted the 'fatwa' had
not utilised effective channels of communication for informing the
Muslim population. The Muslim respondents in this survey was a group
which relied particularly heavily on the religious prescriptives
in their faith to direct their beliefs and behaviour towards organ
donation. Rather than relying solely on their own conclusions regarding
the issue, they were awaiting a decision by the Ulema to provide
guidance as a precedent on this contemporary issue:
"If the religious leaders give
us a clear-cut opinion on this matter then we have less confusion.
Religion is for people to live well; it shouldn't be an obstacle
to something positive like organ donation. More discussion and information
will help us to proceed in this direction."a
"I intended to carry it but we
have some superstitions or beliefs, I don't know which. We don't
know much about it, whether organ donation is right or wrong. Some
say it is right, some are against it. Some say just an eye or any
organ can be donated by a person during his lifetime."
One respondent, however, said:
"I haven't read about organ donation
in the religious literature but my heart tells me it is not right.
With us, only close relatives, no more than four, should touch the
body (to wash it) and place it in the grave."
Another respondent commented that he
had studied the Qur'an and deduced that organ donation was permissible.
Only four of the 32 Muslim respondents
had stated categorically that they thought Islam was against organ
donation and two thought it was regarded favourably.
Indecision or unwillingness to donate
for reasons connected with religious belief or practice were, however,
not limited to Muslims.
A Sikh male commented:
"I want to be in peace when I
am cremated." A Hindu male remarked: " I would not donate
my eyes, ever, because of the ceremony prior to cremation when people
come to the funeral to see the body. I don't want to not have any
A comment by a Hindu male serves as
an example of the sentiments expressed by the majority of all respondents
grappling with whether organ donation was in accordance with the
beliefs of their faith:
"Our religion says do not waste
things; if they can be utilised and used for the good of other people,
then that item should not be thrown away."
Other variables affecting organ
Comments made by a few respondents suggest a cautious attitude towards
organ donation as a result of ignorance of the procedures involved
in transplantation activity:
"Do they take organs out as someone
is dying?" BW
"Does taking organs take place
before or after death?" PM
"I'm worried about someone taking
my organs out while I'm still alive. It goes on." SM
The main reasons for the majority of
people not deciding to donate their organs was that they had not
given the issue serious thought and because, particularly for Muslims,
they did not know what their religion's stance was on the subject.
The range of responses also included thoughts and fears common to
people of all populations:
"I don't know, I don't have enough
"In a couple of years I might
agree to donate. I may change my mind. I mean people in hospital
are donating blood on request." BM
"I am willing to donate. It's
a serious issue and as a Muslim, I want to know if there would be
any religious objection to it. If not then I will donate. Similarly,
I would accept an organ too. Who doesn't want to live longer?"
"I'm not sure about life after
death, but if there is life I want to go complete." SW
"I don't like the idea of someone
cutting me up." GW
"I don't like the idea of my relatives
having to see my body having been carved up." GM "I don't
like the idea of my organs living in another body, it may affect
their personality and make them more like me." SW
"On the one hand it's a good thing
to help others but on the other hand our bodies are specific to
ourselves. How can it be good to mix your body with another? I can't
distinguish what's good or bad in this case, there are no absolutes."
Of the people who would donate, some
reticence was expressed by a few respondents only in donating their
eyes. This was mainly related to how they would look before their
"I would look ugly without my
eyes and anything visible." SW
A few elderly people, willing to donate,
thought there was not much point in making the offer as their organs
were so old by now and of little use to anyone else.
Approximately half of the respondents
said they would accept an organ if they needed one. The rest either
would not accept or hadn't thought about it, a number adding that
the question was hypothetical and it was difficult to say what they
would do in the circumstance. In accepting an organ, all organs
were acceptable though a few had reservations about accepting someone's
"Someone else's eyes may make
me look different. " SW
When those who would accept organs
were asked whether there were people they would not accept organs
from, half of the respondents said they would accept from anyone:
"I think when you are in that
situation you would not care where the organ came from." GW
"If a man is hungry you don't
look at who is giving the food, similarly with organs." GM
A quarter of the respondents did not
comment and a quarter had individual reasons that indicate, for
some people, a preference for organs from those with whom they have
a biological or socio-cultural bond.
"I would not feel comfortable
unless it was a member of my community." GW
"Not someone outside my community,
other people's beliefs and culture are different." SW
"I would want the heart of a Muslim.
These are my feelings. Maybe all hearts are the same. If it's to
be a male donor then I would prefer someone from my immediate family."
"Not an English person. I don't
know much about their beliefs and culture. The only thing I know
is that they are too open. They let their children out young and
marry and divorce many times. They smoke and drink." SW
"Not a Muslim. Because of what
our history says they did to Muslims." SW
Virtually all interviewees said they
would respect the wishes of a deceased relative who had expressed
the desire to donate their organs before death. Of those who were
not sure one Muslim woman commented:
"If the Ulema clarified the issue
and it was permissible in Islam I would give my consent. I would
not do something that is not allowed in my faith."
Another respondent said:
"I would only give my consent
if the wish (to donate) was expressed in writing, not just verbally."
If a relative died and had given no
indication of whether their organs were to be donated, approximately
half of the respondents would give their permission for the organs
to be transplanted. Some said they had never thought about it. The
majority of Muslims felt they did not have the authority to make
such a decision on behalf of the deceased, though a couple said
they would give permission:
"If someone needs it and it can
be useful, then yes." PM
"The dead person wouldn't need
them and it would benefit someone else." SM
A number of people mentioned that it
was difficult to answer the question as, in the context of their
culture, such a decision would not be taken by an individual alone,
but would involve various members of the family:
"There are too many people involved
around the dead person normally. You'd have to ask the head
of the household who's normally the oldest person and probably against
the idea or not used to the idea of donation." SW
"There are other relatives involved
who may be against the idea of donation. In our culture it's not
an individual, but a group decision." SW
Two people's families had been approached
for organs when a relative of theirs had died. One, a Muslim family,
gave their consent as the person had a donor card. In the second
case a Sikh lady commented:
"Somebody did approach our family,
but I was in no state to answer any questions."
This short exploratory study has provided a 'snapshot' picture of
the experience of Asians in Luton with regard to organ donation
and the influence of religion. By sampling purposively and making
the different Asian communities the focus of the research, this
study looks to advance our currently very sketchy knowledge of these
communities' views towards organ donation. The study should be seen
as exploratory, but is nonetheless an important initial step towards
the establishment of a greater knowledge and understanding of the
issues affecting the low donation rate in the Asian population.
In order to understand the context
of people's responses it is important to review the literature concerning
organ donation and religion. None of the religions object to organ
donation in principle although in some there are varying schools
of thought. The recent 'fatwa' (edict) from the Muslim Law Council
has clarified much of the divergence in opinion among Muslim commentators.12
This directive states that it is permissible to donate organs and
accepts brain-stem death as an acceptable diagnosis of death. There
is nothing in Hindu scriptures to indicate that organs cannot be
donated to alleviate the suffering of other people. Some Hindu commentators,
however, have proposed that donation is only acceptable if the desire
to donate is expressed overtly before death.21
There is no religious prohibition against organ transplantation
in Sikhism or Buddhism.22 In Christian
belief, organ donation is acceptable if prior consent has been obtained
either from the donor while alive and/or the donor's next of kin.23
Thus, none of the religious faiths adhered to by most Asians prohibit
In the population studied, religious
prescriptives were important to many Asian people, especially Muslims.
People wish to be informed of the religious stances so that they
can make a more informed decision. Transmission of this knowledge
would certainly facilitate the decision making process for people
to whom the stance of their faith is an important issue. An example
of the failure to inform effectively the relevant populations about
important religious developments is that only two of the 32 Muslims
in the survey had heard of the 'fatwa' by the Muslim Legislative
Council permitting organ donation. This was despite the publicity
it had received. Publicity of the 'fatwa' was limited to a news
item on the morning edition of Radio 4; television coverage on the
evening news in the Midlands area, from where the 'fatwa' had been
initiated; and limited coverage in two Asian newspapers. It is obvious
that the publicity campaign was not utilising effective channels
of communication for informing the Muslim population. Mass media
is used to dispense information to large numbers of people quickly.
However, there are various forms of media and one needs to select
those appropriate to the target group and the message which one
wishes to convey.
This study indicates that, in the population
studied, culture and religion play a much less prohibitive part
in determining the level of organ donation than previously suggested.
However, there is a desire to be aware of the religious stances
so that people can make a more informed decision. The emphasis should
clearly be on a reconsideration of the presently inadequate approaches
to organ procurement and on devising and supplementing these with
more appropriate ones.
This study was made possible with a grant from the King's Fund.