APPENDIX 58
Memorandum from Dr Lorraine Culley, De
Montfort University
INFERTILITY AND
MINORITY ETHNIC
COMMUNITIES
An extensive collection of studies show that
involuntary childlessness can be a devastating experience for
many; with significant consequences for social and psychological
well-being. However, research has mostly been carried out with
middle class, white, treatment-seekers and consistently ignored
non-treatment seekers, those accessing treatments other than IVF,
those in lower socioeconomic groups and those from "non-white"
ethnic groups.[299]
Inequalities in health between and within ethnic
groups have become an increasing focus of research in Britain.
However, studies of ethnicity and reproduction have tended to
concentrate on childbirth and contraception rather than infertility.
There is therefore, a dearth of literature on the way in which
infertility might be experienced by people from minority ethnic
communities, especially in the UK. There are no available data
on the use of infertility services by minority ethnic groups in
the UK. The collection and analysis of ethnicity data in the NHS
is still patchy and much infertility treatment takes place in
the private sector.
According to the 2001 Census, the size of the
minority ethnic population was 4.6 million or 7.9% of the total
population of the United Kingdom. Over 2.3 million people described
their ethnic origin as Indian, Pakistani, Bangladeshi or "Other
Asian" and a significant percentage of this population are
in the childbearing age group.
There is little medical/clinical research which
is concerned with ethnic differences in infertility prevalence,
treatment or outcomes, with only two articles identified in the
literature. Our study represents the only major study of the social
aspects of ethnicity and infertility in the UK. It was concerned
with South Asian communities, although it is recognized that at
least some of the key issues are also likely to affect other minorities.
(Some unpublished data is available to the research team from
a focus group study of attitudes to involuntary childlessness
about the African community in London, undertaken as part of a
programme of postgraduate study supervised by Dr Culley, the principal
investigator on the South Asian study).
The South Asian study, funded by the Trent Region
NHS, explored for the first time in the UK, the social meanings
of infertility amongst South Asian communities and the ethnic,
cultural and religious context of access to infertility services.
The project also produced a short booklet giving basic information
about infertility and its treatment translated into Gujarati,
Punjabi, Urdu and Bengali, and a resource for health professionals
working with South Asian individuals and couples.
The full report of the study includes a review
of contextual literature on access to and satisfaction with infertility
services generally and reviews the literature on professional
perceptions of patients. It also considers the social and psychological
consequences of infertility and feminist contributions to infertility
debates.
With specific regard to ethnicity, the report
demonstrates the wider cultural context of defining and experiencing
infertility in a number of "non-Western" societies,
before going on to present the findings of the work carried out
with South Asian communities in the UK.
The main findings and recommendations of the
South Asian study are included in the executive summary which
follows. For the purposes of this response I have extracted the
following key points which I feel are relevant to the broad question
of cultural and ethnic differences in the impact of, and attitudes
towards, assisted reproduction.
1. There is a very strong pro-natalist ideology
in South Asian communities. Children are highly desired; parenthood
is culturally mandatory and childlessness socially unacceptable.
Children are seen as essential for normal adult existence and
infertility is a highly stigmatized condition, although there
is some evidence for delayed childbearing and a trend for smaller
families within some South Asian communities. Studies with "white"
communities suggest that while the "motherhood mandate"
exists, this norm is increasingly subject to challenge. However,
this is much less common in the communities we studied. Marriage
is almost universal and voluntary childlessness is almost unheard
of.
A social need for male children was also reported
to be widespread and the failure to produce a male child could
almost be regarded as a form of infertility in some families.
Culturally, the birth of male children is reported as a cause
for celebration in a way that is not the case for female children.
Religious, social and economic reasons were given for the importance
of sons. A key issue is that in many South Asian communities,
a daughter leaves her family of origin on marriage and enters
her husbands' family. Sons remain economically and socially part
of the family of origin and have a series of ongoing obligations
to parents and siblings.
This is of potential interest in the debate
surrounding sex selection and assisted reproduction. Although
the HFEA has decided against sex selection on "social"
grounds, there are those who would support allowing this to happen
for purposes of "family balancing". Our view is that
this would probably be welcomed in some communities.
2. Infertility is highly visible and is
not regarded as simply a couple-centred concern. Childless couples
are subjected to social scrutiny. Women bear the main burden of
childlessness (even in male factor infertility) and may suffer
negative reactions to infertility, especially from in-laws. Infertility
was regarded as grounds for divorce and in some cases for men
taking additional wives/partners. At the same time, many examples
of supportive husbands and families were reported. South Asian
couples and individuals may have additional emotional needs to
address, yet the use of trained counsellors is low and participation
in support groups is also limited (though the use of the internet
may make this easier—an issue for further research).
3. There is relatively little knowledge
of the cause of infertility in South Asian communities. There
is little evidence of non-biological interpretations being dominant
and most saw infertility as a potential object of medical investigation,
although there was little knowledge of available treatments other
than an awareness of IVF. A desire for more information was evident.
4. Confidentiality is a very important issue
for South Asian families. Few couples disclose that they are having
treatment. Concerns about confidentiality (at the GP level) may
reduce the numbers coming forward for investigation. Concerns
about confidentiality may affect the use of interpreters, although
there is in any case a serious absence of proper facilities for
interpretation in many Trusts (and in the private sector).
The lack of provision of, and uptake of, official
interpreters was one of the most serious issues which the research
uncovered. The use of informal interpreters was commonplace. In
some cases no independent interpreter was used, even where crucial
decisions about treatment options were made. The failure to use
formal interpreters is widely regarded as unsafe practice—completeness
of information transmission, concordance and even proper informed
consent may be compromised. No material was available in South
Asian languages, yet most clinics provide extensive patient information
in English. All consent forms are in English only. The HFEA literature
is in English only. (A short booklet has been produced from our
study giving basic information about infertility in four main
South Asian languages).
5. IVF was regarded as socially acceptable
to all communities. The use of donated gametes, however, was widely
regarded as socially unacceptable and for the Muslim groups in
particular this was expressed as religiously unacceptable (haram—not
permitted in Islam). The latter is confirmed in various Islamic
fatwas on infertility treatment. Nevertheless, there was an awareness
in most communities, that donated gametes were probably used (confirmed
by medical staff), although the need for secrecy in this was paramount.
There is urgent need for more research on the issue of gamete
donation in minority ethnic communities.
6. Supply of donor gametes. The imminent
ending of donor anonymity may impact differentially on the supply
(and use) of donated gametes. There is already a serious shortage
of "Asian" donor eggs in particular, leading to long
waiting lists. It would appear that there are very few anonymous
altruistic South Asian egg donors. Given the extreme desire for
secrecy and the strong cultural prohibition of the use of donated
gametes, it is unlikely that families would wish to disclose the
use of donated gametes to their offspring. One could also speculate
that ending donor anonymity is likely to inhibit the donation
of sperm from South Asian males.
One issue which requires further clarification
in this scenario is the guidance on the use of "inter-ethnic"
donation. Should Asian or other minority couples be offered the
choice of eggs (or sperm) from other ethnic groups? Current practice
on this seems to be variable. It appears to be decided by individual
clinics or clinicians, using the "welfare of the child"
clause. Current guidance by the HFEA suggests that this should
be avoided. What is the thinking behind this? On what basis is
this decision made in individual clinics? Whose right is it to
decide? Should minority ethnic patients who have virtually no
possibility of achieving a pregnancy because of the shortage of
"non-white" eggs be denied treatment? Interestingly,
the "mixed ethnicity" categories are the fastest growing
of all census categories, so there is clearly less inhibition
outside the Clinic! In my view further research on this issue
is urgently needed.
7. Age limits. The commonly debated issue
here relates to an upper age limit for NHS funded IVF treatment.
However, it may be that a lower age limit is equally or more problematic
for some South Asian communities, where there is a lower age at
marriage and where the expectation is that a pregnancy should
follow marriage fairly quickly. It is not clear if a lower age
limit is imposed at the present time, although the NICE guidelines
appear to suggest one.
8. Those receiving treatment (we interviewed
50 people) generally found staff sympathetic although a significant
minority felt that staff could have given a more sensitive response
when treatment failed. Just over 10% reported instances of ethnic,
religious or gender stereotyping by clinic staff. Most people
were broadly satisfied with care received, but wanted reduced
waiting times and more NHS provision. Given the structural disadvantage
of some (especially Pakistani and Bangladeshi) communities, the
failure of the NHS to adequately fund IVF in particular may impact
differentially on these communities.
A consideration of ethnic differences should
not obscure commonalities among most infertile people. For many,
infertility is a socially devastating condition which can have
profound psychological and emotional effects. Nevertheless, specific
cultural norms and values, language and communication needs and
the structural location of some minority ethnic communities in
British society, give rise to areas of need which are not always
adequately recognised by existing provision. At the same time
it is necessary to note that there is extensive diversity both
between and within minority ethnic communities (eg by socio-economic
status, gender and age) and that any generalisation should be
approached with caution.
October 2004
299 Greil, A l (1997) Infertility and psychological
distress: a critical review of the literature. Social Science
and Medicine 45(11): 1679-1704. Back
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