12 December 2005
Genetic Interest GroupAppeared in BioNews 338
Ann Cryer called for an open debate, proposing that cousin marriage is not only a public health and resource issue, but that '[a]nyone who seeks to excuse the passing on of terrible illness due to cultural traditions needs to know that that sort of culture is unacceptable in the twenty first century'. Here we present GIG's response.
Cousin marriage is a preferred and sustained practice in many parts of the world and has significant social, economic and community benefits: these include maintaining lineage solidarity and offering protection to women. There is a potential health risk arising from recessive genetic disorders, however this is often misrepresented, or can seem overly significant.
'Newsnight' reported that 'British Pakistanis are 13 times more likely to have children with genetic disorders than the general population'. Taken out of context, this statement implies that all British Pakistanis are equally at risk irrespective of marriage patterns, and fails to clarify that the risk relates specifically to recessive genetic disorders. Other types of genetic conditions, including chromosomal abnormalities, sex-linked conditions and autosomal dominant conditions are not influenced by cousin marriage. Most importantly, however, 'Newsnight' failed to present the risk of first cousins having a child with a recessive genetic disorder in absolute terms. This is about three in every 100 births. The great majority of pregnancies do not result in recessive genetic abnormalities. Given that the general population risk of having a child with a congenital or genetic disorder is about two in every 100 births, those frequencies seem even less threatening.
To further contextualise this risk, consider the effect of another risk factor during pregnancy: increased maternal age. Its effect on the rate of Down syndrome, a specific type of chromosomal abnormality, is particularly relevant here. At 35 years of age, the risk is four times that at age 25; most pertinently this risk increases 15 times by the age of 40. The absolute risk at 40 years is one in every 100 births. Advancing maternal age also has a significant impact on infertility, the rate of which is increasing within the general population. A decline in fertility is particularly noticeable in women over 30 years of age.
The NHS has recently committed significant time and resources to help address each of these issues. A national programme is offering Down syndrome screening to all pregnant women. In the treatment of infertility, the National Institute for Health and Clinical Excellence (NICE) guidelines suggest that all couples with appropriate clinical need should be offered up to three cycles of IVF on the NHS. Whilst local inequalities exist, at least one cycle of treatment is now normally paid for by the NHS.
Note the similarity between cousin marriage and increased maternal age. Both represent complex cultural trends and have strong social benefits particularly for women. But both come with a biological cost. The key difference, however, is that cousin marriage is more common amongst a British minority population, whilst increased maternal age more prevalent within the general population, or what might more accurately be defined as the White British population. There are certainly also resource inequalities - between White British and other users of the NHS across the board, and also in respect of access to maternity services. Why should any identifiable group of British citizens be discriminated against with respect to choices in healthcare - or is the rhetoric about a patient-led NHS simply meant for the educated middle classes?
This analogy hopefully illustrates how unrealistic, unworkable and Eurocentric Ann Cryer's proposal to end cousin marriage is. Imagine asking White British women over 35 years to stop having children.
When it was pointed out that rising maternal age was creating an increased demand on the NHS, and also threatening to increase the number of babies with congenital abnormalities, the suggestion that women should have their babies younger was countered by reference to the dominant cultural tradition that expects parents to be financially secure, and preferably home owners. The consequence of this for the NHS (and by implication the public purse) is likely to be greater than that arising from cousin marriages. But the response to new healthcare needs was to improve service provision, not change the culture.
For communities where cousin marriage is the tradition, a similar response would be appropriate - through the provision of education and information, access to counseling and support in the preferred language, and a no-blame approach that enables at-risk couples to come forward for testing and, if they wish, termination of an affected pregnancy - or to have the baby in the confident knowledge that the NHS is as for them as it is for anyone else.
Providing equitable genetic services for all individuals and families will challenge any healthcare system; but it is the only way forward. Using crude science and Eurocentric propaganda to stigmatise one section of the population only diverts attention from real needs and proper responses that reflect the complex realities of Britain's multiethnic society.