Within the UK, 25,000 children have been born using donated gametes (eggs and sperm) or embryos since 1991. There is currently, however, a shortage of donated gametes and this is particularly acute for members of minority ethnic communities. Such couples face very long waiting times for treatment. This study aimed to examine the public understandings of gamete donation amongst British South Asian communities and to explore issues regarding the willingness of South Asian women and men to consider receiving or donating gametes.
Data was collected through fourteen focus group discussions (facilitated by bi-lingual researchers where relevant) with a total of 100 participants - ten groups with women and four with men, together with interviews with 20 key people, including practitioners, counsellors, support group workers, and community representatives. In addition, a community engagement event, attended by 65 people, generated additional data through dialogue between stakeholder groups, and was a first stage dissemination activity.
The research has produced findings relevant to a range of debates concerning public perceptions of risk in reproductive technologies; diverse understandings of family, kinship and procreation and science-society relations.
South Asian women and men framed their discussions of gamete donation in terms of an explicit unease and uncertainty. Given the intense stigma attached to childlessness, most felt that couples might use this technique as a treatment of ‘last resort’, but that it would be highly disapproved of within South Asian communities. Their narratives suggest that this process is perceived as inherently ‘risky’ and these risks can be categorised into a number of different types: risks to do with the body, with emotions and with social relations. Many participants felt that being a donor or potential recipient of donated gametes would be potentially damaging to personal, social and community relations.
There were marked differences in the perception of the use of donated eggs and donated sperm. Pregnancy and birth were seen as establishing a ‘connectedness’ of mother-foetus/child, irrespective of any genetic link. Women were seen to ‘cope’ with the fact of having their own gametes substituted, since they would carry the pregnancy, thus creating a ‘biological link’. Using donated sperm however, was regarded as highly problematic since it did not allow the male to play his culturally important role in procreation and threatened lineage and family continuity. Genetic fatherhood was generally seen as more important than genetic motherhood. Participants also constructed specific views of ‘substance’ and relatedness in the accounts of what is ‘passed on’ and what should be ‘matched’ in the process of gamete donation. For some participants, ‘matching’ donors and recipients was only important at the physical level. However, the idea that gametes carry cultural connections and ethnic identifications was strong in many of the groups, with suggestions that recipients would prefer a donor from a similar ethno-religious background.
The donation of gametes was also perceived as very different for men and for women. Women, it was suggested, have an increased emotional connection with the ‘egg’ which makes the act of altruistic donation difficult to contemplate. However, while the male was seen as having less ‘attachment’ to his sperm, both women and men saw gametes as potential children and given the cultural value of children and family in South Asian communities, this is likely to be a further disincentive to donation. The removal of donor anonymity was considered, by women especially, as a considerable disincentive to act as an egg donor, with much concern expressed at the prospect of a child ‘turning up’ as an adult. Although acting as a gamete donor was viewed as a highly altruistic act, it was seen as involving a number of serious and long-term emotional and relational risks.
Religion was an important factor in considering gamete donation for those participants identifying themselves as Muslim, although not for Hindu or Sikh participants. Many Muslim participants raised a series of objections derived from Islamic perspectives. In Islam, although IVF is permissible, third party assisted conception is considered zina (adultery) and is prohibited as it confuses issues of kinship, descent and inheritance. This is likely to impact on the willingness or otherwise of many Muslims to engage with third party assisted conception. In all ethnic groups, culturally acceptable alternatives to using donated gametes as a response to infertility were commonly discussed, for example divorce and re-marriage, taking more than one wife, and especially informal adoption within families, although it was acknowledged that these alternatives were possibly of declining significance in the UK context.
Third party assisted conception has a very low public profile within British South Asian communities. Although many were aware that gamete donation was possible, few reported having been made aware of a shortage of eggs or sperm and, despite a national campaign, no one had seen any publicity about the need for more donors.
Despite possible similarities with the views of the majority community, the study highlights some culturally and religiously specific ways in which members of South Asian communities may perceive gamete donation and suggests a number of reasons why donors may be in relatively short supply. There is evidence, however, that some people may be prepared to become altruistic donors. A multi-dimensional approach to donor recruitment may yield positive results.
Through collaboration and interaction with user groups, the research findings are being used to support a number of developments. The project team have collaborated with the National Gamete Donation Trust to produce a strategy to enhance communication with South Asian communities. The national infertility support groups ‘Infertility Network UK’ and ‘AceBabes’, have been closely involved in the project and are exploring the implications of the study for supporting South Asian families. The project team are also liaising with the ‘Donor Conception Network’ to work towards providing culturally and linguistically sensitive support for families who have had a donor-conceived child, and all licensed fertility clinics will receive a report outlining key findings and implications for practice. Finally, the study has contributed to an increased awareness amongst national user organisations and other public bodies, of the potential importance of cultural differences in perceptions of gamete donation, and the specific perceptions and needs of British South Asian communities.