Human Tissue and Blood or Organ Donation, Transplantation and ...
Human Tissue and Blood or Organ
Donation, Transplantation and Minority
A Literature Review
Working Paper No. 6
Centre for Evidence in Ethnicity Health & Diversity /
Mary Seacole Research Centre
Prepared by the Mary Seacole Research Centre
De Montfort University
For the European Science Foundation International Exploratory Workshop
Europe's Migrants and Human Tissue Donation
Mark R D Johnson
The phenomenon of a global society, where economies and social structures of many
different geographical and cultural origins are inextricably linked, has dominated the
end of the 20th century and the start of the 21st. Along with this have come many
challenges for health and social policy - including resolving the consequences of
population migration and the interface between different religious and cultural
perspectives. From the point of view of clinicians, there have been interesting
challenges as people from different genetic pools, having different susceptibilities to
diseases, and different probabilities of belonging to specific blood and tissue type
groups, move into the catchment areas of their hospitals and clinics and start to use
their services. All of these have happened alongside rapidly changing medical (and
other) technologies, with new possibilities and ways of treating diseases, and greater
understanding of the role of genetic inheritance in disease. However, rather than
seeing these population movements and differences as merely an opportunity for more
and better epidemiological research, and 'great natural experiment', we can and should
also see this as a challenge for service providers to continue to ensure equity and
justice in the delivery of services, new and old, to all members of society irrespective
of their religious, cultural, ethnic or geographical origins.
One of the great technological advances in medicine was the discovery that lives
could be saved by using the blood, or organs, of one person to replace that of another.
In certain conditions, notably that of kidney failure, this is now the treatment of
choice, being more effective and efficient than any mechanical or pharmaceutical
approach. However, compatibility between donor and recipient remains essential, as
well as a supply of donated (or purchased) human tissue - although it is more or less
universally agreed that 'donated' tissues are more reliable, and indeed economically
effective, than those traded for money. Most cultures place a high value on altruism,
and consequently an international culture and structure has developed around blood
and organ donation and transplantation - but it may be questioned whether this has
kept pace with the development of the global village and the encounter between
populations and societies to which we have referred. This is made more acute by the
observable fact that migrants may have different disease patterns from those of the
society in which they come to reside, and that some of these imbalances may be
attributable to the processes of migration and cultural adjustment (or 'integration'). In
particular, UK and other research has shown consistently that migrants whose origins
are in South Asia, Africa and the Caribbean are more likely than those of Northern
European ("White") origin have higher rates of developing diabetes, circulatory
disorders, and renal failure - and thus a need for kidney donors (Patel & Bhopal 2003;
Trehan et al 2003). We may also perhaps point to the need for more research to reflect
the diversity of the population, and the obligation to provide an opportunity for
members of minority ethnic and migrant groups to enjoy the benefits of other
'transplantation-technology'-based techniques, for example in the treatment of
infertility and gene therapies.
The success of human organ transplantation relies on the willingness of the public to
donate their organs, either during their lifetime or after their death. According to three
surveys in the UK (New et al. 1994), despite 70% of the population reporting a
willingness to donate, only 27-32% actually carries an organ donor card. As such
there is a continued and growing shortage of registered organ donors in the UK.
The situation amongst donors from minority ethnic communities is particularly acute,
with demand far outstripping supply for some groups, especially those originating in
the Indian subcontinent, with some regions of the UK having disproportionate
numbers on waiting lists (Clark et al 1993, Roderick et al 1994, Randhawa 1998a).
This situation is paralleled in the USA, with a shortage of donors from minority ethnic
communities (Lam & McCullough 2000, Yuen et al. 1998). In the UK in some cases,
40% of those waiting for available organs are ‘Asian’ (Whyte 2000). This issue is
compounded by the fact that there are higher rates of end-stage renal failure, caused
by increased rates of diabetes and hypertension amongst British South Asian groups,
implying a potentially higher need for future organ transplantation (Randhawa
1998a). A further complication is that the ‘ethnic matching’ of donors and recipients
tends to improve success rates (Devlin 1993, Smith-Brew & Yanai 1996) which
means that suitable donors can be even harder to locate.
This has generated a growing debate amongst healthcare professionals, social
scientists, voluntary organisations and the minority ethnic press in the UK about the
possible reasons for the shortage of donors from minority ethnic groups and the most
effective strategy to raise the profile of donation in these communities. The majority
of the research literature has, to date, come from the UK and the USA, where the
situation has been highlighted due to the acute shortages of donors amongst particular
groups. We have identified a few relevant publications from other parts of the world,
notably Australia, but in general this seems to be an issue that has not been
exhaustively discussed, although there are signs that it is an issue for many nation-
states, including those in mainland Europe (ISTR 1997; Michielsen 1996; Kristy
1998; Kaplan 1999)
Research which reports on the influence that religious teaching has on the decision to
donate organs and tissue, remains inconclusive. It has, for example, been suggested
that the reasons for low donation rates amongst South Asian groups, in particular are
related to religious prohibitions surrounding the practice (Raleigh 1997). Religious
values surrounding the need for a body to remain intact, have also been reported by
members of the American Chinese community (Lam & McCullough 2000). However,
conflicting research has shown that for South Asian communities there may well be
support for organ donation but there may not necessarily be an awareness of the need
for ‘Asian’ donors (Exley et al 1996, Randhawa 1998b). The influence of religion
may vary by community, since more recent research with South Asian communities
has identified a need for further exploration into the informational needs of Muslim
communities in particular (Hayward & Madill 2003).
A number of studies have reported the importance of informed consent in relation to
organ and tissue donation, with this being related in some cases, to a need for
information around the religious acceptability of donation (Cragg Ross and Dawson
2000, Randhawa 1998b, Al-Faqih 1991). It is unclear whether the reasons for low
numbers of donors is related to religious issues, or rather, is indicative of a need for
more culturally and religiously sensitive information. Indeed a need for increased
information has been illustrated with research with black African and African
Caribbean communities in the UK, with the authors suggesting that a range of
culturally sensitive measures be introduced in order to raise the profile of this issue
A need for appropriate health promotion material to highlight the shortage of donors
has been highlighted in several studies. Spigner et al. (2002) found that knowledge
levels about organ donation amongst African American and Asian American young
people were less than those of other ethnic groups. These groups of young people
were also less likely to have discussed the matter with family members, leading the
authors to suggest a need for culturally sensitive, youth-oriented, health education in
order for family discussions to be facilitated. A similar need for information may exist
where individuals do not necessarily realise the need for organ donors from their
community in particular. The Connect report (2001) for example, found that although
there was an awareness of higher rates of diabetes and hypertension amongst ‘black’
groups this was not linked by the participants to the development of end stage renal
failure and the subsequent need for organ donation. Therefore it was felt that members
of these communities did not identify with organ donation campaigns which they saw
as having little relevance for themselves (see also Exley et al. 1996).
The availability and access to donor cards has also been highlighted as an issue for
minority communities with Connect (2001) reporting that members of black African
and African Caribbean communities in the UK were also not aware of the donor card
system. Yuen et al (1998) suggest that the targeted provision of donor cards to
minority communities from which there is a shortage of donors could increase
donation rates. Indeed, the need for 'targetted' outreach is a familiar theme in respect
of many aspects of ethnicity and 'race'-related inequalities in health care.
Lack of discussion from healthcare professionals
The likelihood that the family of a potential donor will be approached for donation
has been shown to be effected by the perceived ethnicity of the family and the donor.
Siminoff et al (2003) suggest that in a comparison of ‘black’ and ‘white’ families’
experiences of donation in the USA, black families were viewed by healthcare
professionals as less receptive to donation than white families, would be less likely to
have spoken to an organ procurement representative and to be given less opportunity
to discuss the decision to donate. A lack of discussion by healthcare professionals
with families has also been suggested as a reason for lower donation rates among
African American groups by Guadagnoli et al. (1999), as well as ‘black’ families in
the UK (Griffin & Bratton 1995).
Research also suggests that although some communities may report a ‘negotiable
willingness’ in that they are more likely to consider donation if it is to a close relative
(and then to others in a scale which includes in descending order: distant relatives,
people from their home country and finally, strangers) (Lam & McCullough 2000),
health care professionals have been reported as not always responsive to these
requests for ‘matching’ recipients and donors which may impede potential donors
from volunteering, since 'altruism' is strongly associated with group self-identification
(Lam & McCullough 2000; Laver et al 2001; Cragg Ross Dawson 2000). Indeed,
there is also some discussion about the value of matching the 'requester' and the
potential donor's family, as greater cultural understanding may improve the ability of
the professional to encourage donation (Verble & Worth 2003; Mitchell & Sedlacek
Fear and Mistrust
Apprehension and suspicion around organ and tissue donation, and the professionals
responsible for facilitating such programmes, has been demonstrated in several cases.
In a number of studies, respondents (especially those from African and African
Caribbean communities) mentioned a mistrust of medical professionals which
stemmed, both from the perceived lower standards of healthcare provided to black
groups, as well as stemming from historical use of black individuals in medical
experiments, especially in the USA (Connect 2001) (for an example of experiments
see Caplan 1992). This finding was also reported in a study by Cragg Ross and
Dawson (2000) for the Medical Research Council and Wellcome Trust in the UK,
which suggests that mistrust in the medical profession when donating organs, or in
this case, tissue samples, is inextricably linked to past abuses of minority ethnic
patients by the white medical establishment. In addition the MRC study reports
finding that the Asian Hindu community in the UK feel that they are ‘left out’ of
public debates about these issues and are not given enough information in order to be
able to participate.
Fear of bodily mutilation of the deceased, as well as a fear of adverse treatment if
consent to donate is given before death occurs, has also been reported amongst Saudi
Arabian Muslims (Al-Faqih 1991). While most religions are positive about actions
taken to save (others') lives, there is less support apparent for donations for 'science',
or post-mortem "interference" with a body since many religious cultures apparently
anticipate bodily resurrection requiring a complete body for the afterlife (Cragg Ross
Dawson 2000; Campbell 1998).
There is sparse literature surrounding the issue of gamete and embryo donation
amongst minority ethnic communities, with studies in this field tending to focus on
white, middle class couples (Fielding et al 1998, Greil 1997). However, limited data
does suggest that this is also an area in which donors who do not come from the
majority population in the UK, are in short supply. One survey conducted in the UK,
has suggested that the numbers of couples from minority ethnic communities who
request donor oocytes, exceeds the number of donors from those communities
dramatically, in one example by 274 to 17 (Biljan 1995) and others have commented
on the shortage of gamete donors from minority ethnic groups (Golombok & Murray
1999; Kan et al 1998; Sewell 1996).
Research suggests that willingness to engage with scientific technologies that may
disrupt ideas about conjugality, monogamy, family lineage and genetic continuity,
(such as gamete and embryo donation) may be more complex and culturally
contingent (Culley et al. 2004). A lack of appropriate information about New
Reproductive Technologies (NRTs) in general, and gamete/embryo donation in
particular, means that many communities are excluded from wider public debates
around their use. This is compounded by the fact that in some communities there
exists suspicion around the use of such new technologies (Culley et al. 2004), with
childless couples often experiencing stigma and social ostracism as a result (Culley et
al. 2004, Reissman 2000).
Under existing regulations in the UK, the donation by individuals of sperm, eggs or
embryos have remained anonymous. Following a recent announcement from the
Department of Health (DoH 2004), this will cease to be the case after April 2005,
after which time donor conceived children will be able to access the identity of their
donor when they reach the age of 18. This announcement has received a mixed public
response from various groups including donor offspring, who have welcomed the
change in legislation (DoH 2003), as well as clinicians represented by the British
Fertility Society who have expressed concern that the proposed change would lead to
a reduction in the number of donors (BFS 2004). It is expected that this change in
legislation will (in the short term) further reduce an already limited of pool of
(especially egg) donors.
Against this context of debate and legislative change has been a modest but increasing
concern about the existing shortage of gamete donors from MECs (Murray &
Golombok 2000; Golombok & Murray 1999, Kan et al 1998). A survey of 64 licensed
treatment centres in the UK offering either sperm donation or egg donation or both,
carried out by Murray & Golombok (1999) suggests that there is a shortage of gamete
donors from minority ethnic communities, in particular from the ‘Asian’ groups and
in particular a shortage of egg donors. The participants in this survey (clinic staff
responsible for the recruitment of gamete donors) felt that possible reasons for the
shortage of donors from minority communities may be related to ‘particular cultural
and religious attitudes towards reproduction and fertility’ (p.140). However this study
does not go further in offering possible suggestions to the actual reasons for the
shortages and to date there is an absence of literature which describes the views of
minority ethnic communities.
Suggestions for improving donation rates
Several studies and initiatives have gone further in making suggestions for the
alleviation of the crisis in organ and tissue donation amongst MECs:
It is generally agreed that there is a need for more information, which is both
culturally sensitive and informative. In response to this, UK Transplant have
produced a series of culturally sensitive leaflets and posters which were
commissioned following a multi-faith conference in Bradford in 2000 (see
Bradford Hospitals NHS Trust 2000), which revealed a strong consensus in favour
of organ donation from all major faiths but misconceptions within the public and
In order to increase public debate and user engagement in this issue, it has been
suggested that key figures within communities are invited to facilitate and
generate discussion (Baines et al 2002). The authors of this study organised a
public meeting/ forum to promote awareness of transplant issues affecting Asians
in Glasgow. They suggest that the issue needs to be integrated into Asian culture
by religious and business leaders and also offer the suggestion that women over
30 years old and based in the home may be in a unique position from which to
influence the wider family and social network.
Targeting minority ethnic press and media has also been highlighted as a
potentially effective way to get information to people, since it has been suggested
that mainstream campaigns are not perceived as relevant by some minority
communities (Connect 2001). Ahmed et al. (1999) found lower rates of donor card
carriers amongst South Asian population in the UK, and suggests that this is due
to a lack of information and knowledge in this area, which could be resolved by
targeting of the ‘Asian’ media.
The National Gamete Donation Trust (the comissioners of the survey by
Golombok & Murray 1999) have subsequently produced a document: A quest for
life: Overcoming the shortage of egg and sperm donors in the UK, (NGDT 2000)
which does offer suggestions for increasing the numbers of donors (2000: 16-17).
These include: publicity, selective targeting, national or centralised banks, clinic
open days, greater compensation, personalising adverts to foster empathy.
However, none of the suggested solutions were aimed specifically at minority
The Connect report (2001) suggests that an increase in the numbers of black
healthcare professionals involved in donation programmes will allay fear and
mistrust, media campaigns should aim to be more inclusive and culturally
appropriate, and prominent black spokespeople should be used in order to raise
the profile of any campaign.
Roark (1999) reports on the use of a young heart transplant recipient at a National
Organ and Tissue Donation Awareness Week event in the USA in inspiring
attendees to consider becoming donors.
Callender & Miles (2001) report on the National Minority Organ Tissue
Transplant Education Program (National MOTTEP) in the USA, which is reported
as proving successful in increasing numbers of people who will become donors in
the future. The authors conclude that culturally aware health education, which
targets minority ethnic communities, can effect positive change towards donation.
They also suggest that interventions need to be sustained over time in order to
increase donation rates.
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Note on the Methodology of the Literature search:
We adopted a semi-systematic approach to searching the literature on a variety of
databases including Medline, ASSIA (Applied Social Science Index), Ingenta,
Science Direct, CINAHL, Helmis and the King's Fund using a variety of inclusive
search terms to maximise possible finding. However, a very large number of items
found were to do with chemical markers and biomedical discussion so where required
we introduced a group of terms to restrict to an “attitudes, approach, views on, beliefs,
practices, ethics” type set in order to reduce the group to manageable limits. An
example of one such search is given below:
Database: CINAHL <1982 to March Week 2 2004>
1 (blood and (transfusion or donation or donor$)).mp. [mp=title, cinahl subject
headings, abstract, instrumentation] (1232)
2 (ethnic or multi-cultural or cross-cultural or cultur$ or religi$).mp. [mp=title,
cinahl subject headings, abstract, instrumentation] (22814)
3 1 and 2 (56)
4 from 3 keep 6,11-12,29,34,36,38 (7)
5 from 4 keep 1-7 (7)
The following Abstracts are included as they may add to the synthesis above
Armitage S. Warwick R. Fehily D. Navarrete C. Contreras M.
Cord blood banking in London: the first 1000 collections.
Bone Marrow Transplantation. 24(2):139-45, 1999 Jul.
The London Cord Blood Bank was established with the aim of collecting, processing
and storing 10000 unrelated stem cell donations for the significant number of children
in the UK requiring transplantation, for whom a matched unrelated bone marrow
donor cannot be found. Collection is performed at two hospitals by dedicated cord
blood bank staff after delivery of the placenta. Mothers are interviewed regarding
medical, ethnic and behavioural history by nurse counsellors and sign a detailed
consent form. Donations are returned to the bank for processing. Volume reduction is
undertaken by a simple, closed, semi-automated blood processing system, with
excellent recovery of progenitor cells. Units are cryopreserved and stored in the
vapour phase of liquid nitrogen. Blood samples from mothers and cord blood
donations are tested for the UK mandatory red cell and microbiology markers for
blood donors. Donations are typed for HLA-A, B and DR at medium resolution
(antigen split) level using sequence-specific oligonucleotide probing and sequence-
specific priming techniques. The selection of collection hospitals on the basis of
ethnic mix has proven effective, with 41.5% of donations derived from non-European
caucasoid donors. Bacterial contamination of collections has been dramatically
reduced by implementation of improved umbilical cord decontamination protocols.
Baines LS. Joseph JT. Jindal RM.
A public forum to promote organ donation amongst Asians: the Scottish initiative.
Transplant International. 15(2-3):124-31, 2002 Mar.
There is a chronic shortage of organs for transplantation in the UK. This problem is
particularly acute amongst Asians living within the UK. The Transplant Unit,
University of Glasgow, joined forces with local businessmen to initiate a public
meeting to promote awareness of transplant issues affecting Asians in the greater
Glasgow area. During the Forum, we conducted a survey to determine the level of
knowledge about organ transplantation, donation and willingness to donate, in
relationship to the age, gender, marital status and religious affiliation amongst the
attendees. The Forum was conducted at a public hall after publicity in the local press
and Asian shops. The meeting was attended by over 300 people of Asian origin. Of
the 90 survey forms handed out, 80 were returned fully completed. There was almost
no opposition to organ donation, and many of the respondents were aware that
religious leaders in the UK had endorsed organ donation. However, favourable
disposition to these issues was not accompanied by carrying of the organ donor card,
despite an awareness of the National Donor Register. The majority of the respondents
were willing to undergo live organ donation, but were undecided about cadaveric
donation. The issue of presumed consent drew mixed responses. Asians in the
Glasgow region are not sympathetic to the matter of organ transplantation and
donation, despite their recognition of the issues of organ shortage. We suggest that the
matter needs to be further integrated into Asian culture by religious leaders and
business persons. Our findings indicate that women over the age of 30 and based in
the home may be in a unique position of influence by virtue of their position of
centrality within the social network. This approach may also be suitable in other areas
of the UK and the world with a large number of ethnic minorities.
Boulware LE. Ratner LE. Cooper LA. Sosa JA. LaVeist TA. Powe NR.
Understanding disparities in donor behavior: race and gender differences in
willingness to donate blood and cadaveric organs.
Medical Care. 40(2):85-95, 2002 Feb. (39 ref)
Recent efforts to recruit blood and organ donors have only marginally improved
demographic disparities in willingness to donate. Few studies have examined which
factors are most important in explaining race and gender disparities in willingness to
donate. OBJECTIVES: To assess race and gender differences in willingness to donate
blood and cadaveric organs, and to determine the extent to which several factors
(including sociodemographic characteristics and attitudes about religion and mistrust
of hospitals) might explain differences in willingness to donate. RESEARCH
DESIGN: Cross-sectional telephone survey of Maryland households contacted via
random-digit dialing. MEASURES: Past blood donation, organ-donor status on
driver's license, and measures of medical mistrust and religious and spiritual salience.
SUBJECTS: Persons age 18 to 75 living in the Baltimore, Maryland metropolitan
area. RESULTS: Of 385 respondents (84% of randomized households), 114 were
black females, 46 were black males, 110 were white females, and 69 were white
males. Before adjustment, black females were least willing to donate blood (41%),
and black males were least willing to become cadaveric donors (19%) among all race-
gender groups. Adjustment for respondent concerns about mistrust of hospitals and
discrimination in hospitals explained most differences in willingness to donate blood,
whereas adjustment for respondents' beliefs regarding the importance of spirituality
and religion explained most differences in willingness to donate cadaveric organs.
CONCLUSIONS: Both race and gender are important identifiers of those less willing
to donate. To maximize efficiency, donor recruitment efforts should focus on race-
gender groups with lowest levels of willingness. Potential donor concerns regarding
mistrust in hospitals and religion/spirituality may serve as important issues to address
when developing programs to improve donation rates.
Callender CO. Hall MB. Branch D.
An assessment of the effectiveness of the Mottep model for increasing donation rates
and preventing the need for transplantation--adult findings: program years 1998 and
Seminars in Nephrology. 21(4):419-28, 2001 Jul.
The National Minority Organ Tissue Transplant Education Program (MOTTEP)
evaluated the effects of a community-implemented health education program for adult
members of minority population groups to affect attitude, knowledge, and intent to
change behavior. In addition, this study represents 1 of the first major initiatives to
formally address prevention as a strategy to contribute to reducing the need for organ/
tissue transplantation among minorities in the United States. The study targeted
students (youth) and adults representing different ethnic groups (African-Americans,
Alaskan Natives, Filipinos, Latinos, and Native Americans) who attended health
education presentations addressing organ tissue donation, transplantation, and illness
prevention in 15 different cities in churches, schools, and other sites. A cross-
sectional study that used questionnaires was designed for collecting data from all
participants. This article presents data on the adult sample only. Preintervention and
postintervention data were collected from 914 adult participants to determine any
immediate effects of the intervention. By using data from matched sets of the
preintervention and postintervention questionnaires for all adult participants, there
were significant increases in (P < or =.000) trust in doctors, future plans to become
organ donors, and in participants' spiritual/religious beliefs about organ/tissue
donation. There was also a significant increase (P <.05) in participants' awareness of
the perceived need for organ/tissue donation. African-American participants were
significantly more likely (P < or =.000) to report trust in doctors, future plans to
donate organs/tissue, and perceive the need for donation as a result of MOTTEP
presentation. Caucasian participants showed a significant increase (P < or =.007) in
trust in doctors, perceived need for organ donation (P < or =.05), and in shifting
spiritual/religious beliefs about organ/tissue donation (P < or =.02). Attitudes,
knowledge, beliefs, and behavioral intentions about organ/tissue donation and illness
prevention can be affected by culturally appropriate health education programs
designed for targeted population groups. Sustained changes in behavioral intentions
toward organ donation and illness prevention may require multiple educational
interventions in different community settings to increase donation rates and improve
behavioral health practices to prevent illness. Copyright 2001 by W.B. Saunders
Religion and the body in medical research.
Kennedy Institute of Ethics Journal. 8(3):275-305, 1998 Sep.
Religious discussion of human organs and tissues has concentrated largely on
donation for therapeutic purposes. The retrieval and use of human tissue samples in
diagnostic, research, and education contexts have, by contrast, received very little
direct theological attention. Initially undertaken at the behest of the National Bioethics
Advisory Commission, this essay seeks to explore the theological and religious
questions embedded in nontherapeutic use of human tissue. It finds that the "donation
paradigm" typically invoked in religious discourse to justify uses of the body for
therapeutic reasons is inadequate in the context of nontherapeutic research, while the
"resource paradigm" implicit in scientific discourse presumes a reductionist account
of the body that runs contrary to important religious values about embodiment. The
essay proposes a "contribution paradigm" that provides a religious perspective within
which research on human tissue can be both justified and limited.
Status of umbilical cord blood transplantation in the year 2001. [Review] [41 refs]
Journal of Clinical Pathology. 54(6):428-34, 2001 Jun.
Umbilical cord blood (UCB) transplantation is limited to small recipients because of
the low haemopoietic cell dose. Children from ethnic minority groups may benefit
most from cord blood transplantation. Cohort controlled retrospective data indicate
that there is significantly less acute and chronic graft versus host disease associated
with the transplantation of human major histocompatibility complex (HLA) identical
sibling cord blood compared with HLA identical sibling marrow. Controlled data are
not yet available to confirm this observation in unrelated donor cord blood
transplantation. The difference in leukaemic relapse seen after cord blood compared
with bone marrow transplantation is also unknown. Tentative recommendations for
the use of umbilical cord blood for transplantation are as follows. Collection is
indicated from healthy newborn siblings when urgent transplantation is required for
an older child in a family. The haematologist responsible for the older child, with the
approval of the family and the obstetric team, should contact the medical director of
the nearest cord blood bank to discuss arrangements for the UCB to be collected and
HLA typed. Antenatal blood sampling to HLA type the fetus is not recommended.
Umbilical cord blood should be considered when allogeneic transplantation is the
treatment of choice for a child who does not have an HLA identical sibling, or a well
matched unrelated adult volunteer donor. The potential advantages and disadvantages
of using an HLA haplotype matched peripheral blood stem cell family donor rather
than an unrelated cord blood donation should be discussed. There are no comparative
data available as yet. At present, UCB transplantation should only be considered if a
suitably matched donation contains at least 2 x 10(7)/kg nucleated cells. Effectively,
this means that most adults and larger children are not suitable recipients.
Jeffrey RF. Woodrow G. Mahler J. Johnson R. Newstead CG.
Indo-Asian experience of renal transplantation in Yorkshire: results of a 10-year
Transplantation. 73(10):1652-7, 2002 May 27.
There is a significant Indo-Asian community in Yorkshire. The rate of end-stage renal
failure is disproportionately high in this ethnic group. There have not been any large
studies of this ethnic minority's access to and outcome after cadaveric renal
transplantation. METHODS: Three local cohorts were studied: 846 adult patients
(9.1% Asian) who started renal replacement therapy 1990-1994, 822 adult patients
(11.4% Asian) registered on the transplant waiting list 1985-1994; and 608 adult
patients (8.6% Asian) transplanted 1985-1994. RESULTS: At 1 year from the start of
dialysis, 34% of Asian and 31% of non-Asian patients were registered onto the
waiting list. After adjustment for age in a multifactorial model, Asian patients were
less likely to be listed (relative risk, 0.68), although this did not reach statistical
significance (P=0.06). There was a significant difference in graft rate between the
groups: at 3 years 72% of non-Asians versus 55% of Asians had been transplanted
from the waiting list (P<0.001). For those transplanted, HLA matching was superior
for white patients: 34% versus 20% of pairings achieved a 000 mismatched or
favorably matched graft (P<0.05). Transplant survival at 5 years was 71% in the non-
Asian and 58% in the Asian patients (P=0.07). Asian cadaveric donation was
identified in 2 of 608 transplants during a 10-year period.
Asian patients gained access to the transplant waiting list at a similar rate to the non-
Asian white majority. Because of difficulties with HLA matching, Asian patients
were significantly disadvantaged in receiving a transplant once listed, and there was a
trend towards reduced posttransplant survival. Cadaveric donation was uncommon
from within the Asian community; the reasons for which are likely to be complex.
Kan AK. Abdalla HI. Ogunyemi BO. Korea L. Latarche E.
A survey of anonymous oocyte donors: demographics.
Human Reproduction. 13(10) :2762-6, 1998 Oct.
This is a questionnaire based study of 501 women enquiring about anonymous oocyte
donation at a private in-vitro fertilization (IVF) unit, investigating the demographic
characteristics and logistic issues involved in ovum donation. The 501 women were
made up of 356 women who did not donate ('non-donors') and 145 women who
eventually donated their oocytes ('donors'). Although there was a majority of
housewives among the enquirers, women in full-time employment were the majority
of actual donors. Logistic factors such as the travel and time commitment involved
were major reasons for non-donation as well as concerns about complications. There
was a paucity of ethnic donors. Recruitment strategies must focus on retaining
potential donors and ensuring a higher proportion become actual donors. These
strategies must address the logistic difficulties associated with non-donation including
transport problems and social commitments by assisting with childcare provision and
travel. Improving donor education and the access to more personal and non-
threatening information were other areas that needed attention which were highlighted
in the survey.
Kaplan, E. H.
Implicit valuation of a blood-exclusion decision
1999 Medical Decision Making., 19: (2); 207 - 213.
This paper presents an implicit valuation of Israel's decision to exclude blood
donations from Ethiopian immigrants. The approach adopts assumptions that
deliberately overstate the public health effectiveness of this policy, for if such an
analysis fails to justify exclusion on public health grounds, nothing will. Building on a
recent (over)estimate of the number of infectious donations prevented by the ban, the
analysis considers the cost of HIV-infectious donations entering the blood supply, the
benefits of healthy donations, and the cost of needlessly screening blood that will be
discarded without regard to the test result. The analysis also highlights the social costs
of excluding donors on the basis of ethnicity. The possibility of downstream HIV
transmission from transfusion recipients infected from contaminated blood is also
considered. All such calculations are made in a manner that deliberately favors the
exclusion decision. In spite of such a one-sided analysis, the author concludes that the
exclusion policy is not justifiable on cost-benefit grounds if the social costs of
exclusion exceed $218,000 per year, or $3.63 per Ethiopian immigrant annually
Toward understanding Vietnamese attitudes, beliefs and practices regarding blood
Social Sciences in Health: International Journal of Research & Practice. 4(3):154-62,
1998 Aug. (5 ref)
Approximately 30% of the Vietnamese population are type B blood group, present in
only 8% of the Caucasian population. The Vietnamese population in Australia has
tripled in the last decade and Viet Nam is now the main source of Australia's
immigrants. It is presumed that Vietnamese people very rarely donate blood.
Availability of type B blood for transfusion is often low and may be inadequate to
meet the needs of the growing Vietnamese community in the future. The objective of
this study was to determine attitudes, beliefs and practices of Vietnamese immigrants
in Melbourne in relation to blood donation. The study utilized quantitative and
qualitative data obtained by a questionnaire and interviews with key members of the
Vietnamese community in both Melbourne and Viet Nam. The results of the study are
not only directly relevant to the question of ensuring an adequate supply of safe blood
to the community but also to increase the understanding by health professionals of Vi!
etnamese people's culture in relation to reduced blood volume and its perceived
effects on health. 'Viet Nam' is used throughout this study rather than 'Vietnam' as this
is the official format used in Viet Nam and by organizations such as United Nations
agencies and the Bureau of Immigration and Population Research in Australia.
Khan Z. Randhawa G.
Informing the UK's South Asian communities on organ donation and transplantation.
Edtna-Erca Journal. 25(1):12-4, 1999 Jan-Mar.
There is a growing demand for human organs for transplantation, particularly of the
kidney among the UK's South Asian population which, due to problems with
histocompatibility can only be met with a significant increase in the number of Asian
donors. Specific attempts have only recently been made to attract donors from South
Asian communities using 'ethnically-targeted mass media'. A recent pilot study sought
to evaluate the effectiveness of these initiatives in providing information with regards
to organ donation for the South Asian population. The findings show that detailed
information related to transplantation activity had been learned only through the
experience of people undergoing transplants within the community and has been
transmitted through various informal networks rather than through the resources
provided by the Department of Health. This paper provides an overview of who the
South Asians are and how these community networks were established. [References:
Laver JH. Hulsey TC. Jones JP. Gautreaux M. Barredo JC. Abboud MR.
Assessment of barriers to bone marrow donation by unrelated African-American
Biology of Blood & Marrow Transplantation. 7(1):45-8, 2001.
African Americans have a lower registration rate for becoming potential bone marrow
and stem cell donors. The same attitudes and behaviors are exhibited in regard to solid
organ and blood donations, causing a serious under-representation of the African-
American population in the donor pool. In our efforts to increase donor availability
for African Americans through a project funded by the Medical University of South
Carolina, we used a survey to determine the reasons African Americans do not
participate as donors for bone marrow. We surveyed 589 African Americans, a great
majority of whom were women. Our survey identified major barriers to donation to be
the lack of awareness that transplantation can save lives, the cost of donation, and the
lack of opportunities to donate. The most effective interventions in increasing
donation have been to provide both educational programs preceding marrow drives
and the opportunity to donate. Through these efforts, the number of potential African-
American donors has increased from 768 (accrued over a period of 12 years) to 1977
in less than 2 years. We conclude that a minority recruitment program targeting
African-American volunteers for the National Marrow Donor Program (NMDP)
should include an education component addressing the most common barriers before
Lam WA. McCullough LB.
Influence of religious and spiritual values on the willingness of Chinese-Americans to
donate organs for transplantation.
Clinical Transplantation. 14(5):449-56, 2000 Oct.
The rate of organ donation among minority groups in the United States, including
Chinese-Americans, is very low. There is currently very little data in the biomedical
literature that builds on qualitative research to quantify the attitudes of Chinese
Americans toward organ donation. The present study quantitatively assesses the
religious and cultural reasons that Chinese-Americans appear to be less willing to
donate their organs than other populations. It also seeks to determine whether
Confucian, Buddhist, or Daoist ideals are a significant factor in their overall
reluctance to donate organs among respondents in this sample. A questionnaire
distributed to Chinese American adults asked about general feelings toward organ
donation and Buddhist, Confucian, Christian, Daoist, and other spiritual objections.
The results suggest that Chinese-Americans are indeed influenced by Confucian
values, and to a lesser extent, Buddhist, Daoist, and other spiritual beliefs, that
associate an intact body with respect for ancestors or nature. Another significant
finding is that the subjects were most willing to donate their organs after their deaths,
to close relatives, and then in descending order, distant relatives, people from their
home country, and strangers. This 'negotiable' willingness has enormous implications
for clinicians, who may be able to increase organ donation rates among Chinese-
Americans by, first, recognizing their diverse spiritual beliefs, and, second, offering a
variety of possibilities for the organ procurement and allocation.
Plawecki HM. Plawecki JA.
Improving organ donation rates in the Black community.
Journal of Holistic Nursing. 10(1):34-46, 1992 Mar. (26 ref)
The risk of developing end-stage renal disease is four times higher in the Black than
in the White population. The number of Blacks on dialysis or on the waiting list for
transplantation continues to grow due to an insufficient number of suitable organ
donors. Same-race transplants have been shown to be more successful when blood
types and human leucocyte antigens are used as the matching criteria. The low levels
of organ donation by Blacks has been attributed to a number of factors. This article
reviews some of the more complex factors (eg., social practices, religious beliefs, and
cultural expectations) affecting the organ donation decision. In addition, some
implications and strategies are suggested that may increase the rate of organ donation
in the Black community.
An exploratory study examining the influence of religion on attitudes towards organ
donation among the Asian population in Luton, UK.[see comment].
Nephrology Dialysis Transplantation. 13(8):1949-54, 1998 Aug.
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 over-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 of examining the influence of religious
beliefs, amongst 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 been 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.
The changing nature of organ procurement policies and the implications for the UK
2001 Journal of Health & Social Policy., 12: (3); 53 - 74.
The shift away from socialized forms of welfare over the past twenty years has
changed the symbolic basis on which bodily parts are exchanged. Titmuss viewed the
newly-formed National Health Service in the United Kingdom as a vehicle for
institutionalizing altruistic practices, notably the voluntary "gift" of blood to strangers
represented by the transfusion service. More recent advances in medical technology
have made new forms of bodily tissue donation possible, including the transplantation
of whole organs. Yet the excess of demand over supply is forcing a change from the
principle of voluntarism on which "opting-in" procurement arrangements have
hitherto rested to one of presumed consent and the system of "opting-out" adopted in
other countries. The implications of this transition within the context of late twentieth
century multi-cultural Britain are examined
Rosendale JD. Dean JR.
Organ donation in the United States: 1988-2001.
Clinical Transplants. :93-104, 2002.
Based upon information reported to the United Network for Organ Sharing (UNOS)
as of December 12, 2002: 1. There were 6,082 cadaveric and 6,535 living donors
recovered in 2001, a 49% and 258% increase over those recovered in 1988. 2. The
number of cadaveric donors aged 50 or older increased from 12% of all donors in
1988 to 31% of all donors in 2001. 3. The typical cadaveric donor in 2001 was a
white male with ABO blood type O between the ages of 35-49. In 2001, a typical
living donor was a white female with ABO blood type O between the ages of 35-49.
4. Between 1988-2001, the percentage of minority donors increased for cadaveric
donors (from 17% to 27%), and for living donors (from 24% to 30%). 5. The
percentage of living donors who were either spouses or unrelated to the recipient
increased from 5% in 1988 to 27% in 2001. 6. In 2001, California (10.2%) was most
often listed as the state of residence for cadaveric donors, followed by Texas (7.9%)
and Florida (7.2%). 7. In 2001, cadaveric donors were recovered most often on
Tuesdays (15.1%), followed by Sundays (14.7%) and Mondays (14.6%). 8. In 2001,
living donors were recovered most often on Wednesdays (28.7%), followed by
Tuesdays (25.9%) and Thursdays (19.5%). 9. In 2001, cadaveric donors were
recovered most often in October (9.2%), followed by May (9.0%), and August
(8.8%). 10. In 2001, living donors were recovered most often in August (9.4%),
followed by July (9.4%) and October (9.1%).
Siminoff LA. Lawrence RH. Arnold RM.
Comparison of black and white families' experiences and perceptions regarding organ
Critical Care Medicine. 31(1):146-51, 2003 Jan.
Black families donate at a lower rate than white families. To help develop effective
interventions, we compared black and white families' experiences. OBJECTIVE: To
compare the organ donation request experiences of black and white patients' families
with the hope of identifying factors to better inform consent-rate interventions among
blacks. DESIGN: Chart reviews were conducted on files of all deceased patients.
Audiotaped in-person interviews were conducted with family members, and telephone
interviews were conducted with involved healthcare providers and organ procurement
organization staff. SETTING: Nine trauma hospitals located in southwest
Pennsylvania and northeast Ohio. PARTICIPANTS: A sample of 415 families of
organ donor-eligible patients (61 black, 354 white). MEASURES: Measures of
families' attitudes about and experiences with donation and transplantation.
RESULTS: White families were more likely to be correctly perceived as receptive to
donation. Black families viewed as receptive were less likely to be engaged in
discussing as many donation-related issues as white families (p <.01). They were also
less likely to have spoken to an organ procurement organization representative (p
=.024) and were given fewer opportunities to consider the decision with healthcare
provider or organ procurement organization staff. Black families had less knowledge
about their family member's wishes, expressed less-favorable attitudes toward organ
donation and the health care system, and, finally, were less likely than white families
to donate organs (p =.001). A minority of black families (32.8%) knew about the need
for more black donors. CONCLUSIONS: Interventions to increase consent among
blacks need to encourage openness about organ donation within the black community
and change healthcare provider and organ procurement organization attitudes and
practices toward black families as potential donor families.
Islamic views on organ donation. [Review] [12 refs]
Journal of Transplant Coordination. 8(3):157-60; quiz 162-3, 1998 Sep.
As medical technology continues its advance, the use of organ transplantation for the
palliation and cure of chronic diseases is rising. However, many barriers to organ
donation exist, including religious ones. It has long been known that Muslims in
North America tend not to donate organs. In the past this tendency has been attributed
to religious prohibitions even though cultural views may also play a strong role. The
purpose of this article is to explore and define the Islamic religious opinion on organ
donation and transplantation to enhance healthcare professionals' understanding of
Islamic views concerning brain death and organ donation. It is hoped that this
knowledge and understanding may benefit both patients and caregivers in the North
American healthcare setting. [References: 12]
Verble M. Worth J.
Cultural sensitivity in the donation discussion.
Progress in Transplantation. 13(1):33-7, 2003 Mar.
Procurement professionals disagree on the necessity for matching donation requestors
with donor families by race or ethnicity in order to increase donation rates. However,
reports from minority requestors indicate that displays of cultural sensitivity during
donation discussions may affect both the discussions and family decisions. In
donation discussions with African Americans, Asians, American Indians, and
Hispanic people from traditional cultures, requestors should consider factors such as
which family representatives to include, cultural familiarity with specific diseases
necessitating transplants, forms of address, concepts of time, methods of decision
making and communicating refusal, and families' previous experience with the
hospital and the American society as a whole.
Mark R D Johnson
Centre for Evidence in Ethnicity Health & Diversity
Mary Seacole Research Centre, De Montfort University Leicester. August 2004.