21 January 2013
Nicky Hudson, senior research fellow at the School of Applied Social Sciences, De Montfort University. Lorraine Culley, professor of social science and health at the School of Applied Social Sciences, De Montfort UniversityAppeared in BioNews 689
When we set out over ten years ago to carry out research about infertility within British South Asian communities (1-3), little was known about how involuntary childlessness and its possible resolution with assisted conception was experienced by members of minority ethnic communities in the UK. Despite some improvements in the evidence, much of what we know about infertility is still based on the experiences of mostly white, middle class couples.
Whilst rates of voluntary childlessness may have increased in the general population, British South Asian communities remain, in general, strongly pro-natalist and most married adults will be expected to have children. Infertility remains highly stigmatised, with potentially highly negative social consequences, for women in particular.
The use of IVF is largely accepted within South Asian communities, but many people in our research (4) considered the use of third party assisted conception to be a highly risky endeavour. The use of reproductive material from outside the marital relationship was seen to transgress legitimate family and kinship boundaries and presented a particular threat (in the case of sperm donation) to culturally and religiously sanctioned understandings of patrilineal continuity.
Donor conception is therefore considered to be a treatment of last resort, the use of which would not be disclosed to others. As is still the case in many contexts, donor conception is perceived as unusual, controversial and for some, fraught with ethical dilemmas. However within South Asian communities, donor conception was seen to carry the potential for negative social consequences: gossip, stigma, social ostracism, and in some cases, implications for the marriage prospects of donor-conceived individuals.
This is not to say that South Asian couples do not use donor gametes in order to conceive a much-longed for child: we talked to people who were doing so in spite of wider social mores and we know that there is a demand for donor gametes from minority ethnic donors, which continues to outstrip supply (5). As a result of donor shortages, couples are often encouraged to bring 'known' donors, join long waiting lists, or for some, to seek treatment in another country; the implications of which are rarely acknowledged.
For all couples who explore the use of donor gametes, a complex set of decisions awaits. For couples from South Asian communities, this is often compounded by the knowledge that their treatment choices may be socially and/or religiously contentious. Decisions about donor choice, donor 'matching' and disclosure become highly significant in such a context. Few couples we spoke to had shared information about their use of IVF widely, and many hadn't told anyone. For those using donor eggs or donor sperm, the close management of information was critical.
Current debates about practices surrounding donor conception may therefore have different meanings and consequences within minority communities. Policy decisions may not map neatly onto the moral frameworks in operation in all sections of society. Disclosure decisions, for example, need to be viewed not just as relating to potential parents, their future children and the donor, but as having wider and ongoing implications in communities where infertility is not considered solely the province of the individual or nuclear family.
The impact of infertility and its resolution with treatments like IVF can be devastating, regardless of ethnicity. However, for some, the social and cultural context in which that experience takes places brings a different range of dilemmas and decisions. Those delivering services and consulting the public need to be aware of these important differences. The ethnocentric manner in which these dilemmas are often constructed in public and academic debates marginalises the concerns and needs of some minority ethnic communities, who, as relatively disadvantaged groups, may be denied access to treatment for reasons of economic cost and/or denied effective access to some options due to a shortage of gametes.
Such silences are not acceptable and increased efforts must be made to include diverse voices in public debates, consultations and research on reproductive technologies. Sadly, ten years on from the beginning of our work, there is little sign of progress in this regard.