Clients-as-researchers: issues in haemoglobinopathy research.

The haemoglobinopathies (sickle cell anaemia and beta-thalassaemia) are serious inherited blood disorders which in Britain predominantly, but by no means exclusively, affect people of African-Caribbean, Asian, Middle Eastern and Mediterranean descent. Sickle cell anaemia can be painful and carries the psychological stress of unpredictability. The treatment for beta-thalassaemia is psychologically monotonous and requires frequent hospitalization for blood transfusions. Both are expensive to treat and manage, and are likely to involve heavy workloads of care for the families concerned (Ahmad and Atkin, 1996). It is comparatively inexpensive to screen for carriers who are usually not ill themselves and may not know of their genetic status as carriers. The World Health Organization (1988) recommends an integrated programme of clinical treatment, screening and diagnosis of carriers, genetic counselling, professional and community education. To date, however, such haemoglobinopathy services in Britain have not been well co-ordinated. (Davies et al, 1993), and provision of genetic counselling services varies greatly and often involves part-time, temporary appointments and precarious sources of funding (Prashar et al, 1985). Service development continues to be on the basis of guidance only (Department of Health, 1993) and has been criticised by a leading consultant for not stipulating compulsory elements of mainstream health service provision (Davies, 1993). The corollary of this unequal, some would say racist, lack of provision of services is that the work of care and education for issues such as sickle cell and thalassaemia has fallen onto Black women (Bryan et al, 1985; Ahmad and Atkin, 1996)