2.4 Current UK provision
One way of describing the organizational shift that the advent of predictive medicine would demand is to suggest that genetics would become a general, rather than a specialist service. But it is much easier to say that than to explain how it will happen. For all the publicity about genes, genomes and genetic information, medical genetics is a very small part of current health services.
In the UK, an indication that a patient or a family has a genetic problem will lead to a referral to a regional genetics centre. There are just 25 of them, each catering for a population of between one and five million people. Between them, they dealt with 37 000 amniotic fluid samples from pre-natal testing in 1997–98, of which just 4.1% were abnormal. In the same year, a mere 769 DNA tests on adult cells for individual genetic variants, such as those linked with cystic fibrosis or breast cancer, were carried out in UK molecular genetics laboratories.
Even at this level, the regional genetics centres are already stretched. Their workload increased by between 50 and 100% between 1991 and 1997, and has gone on increasing since. For example, the number of genetic tests available for use rose from 41 diseases in 1991 to 178 diseases by 1998. As a specialist service, regional genetics centres are widely regarded as a model of organization, with specialist doctors typically working alongside counsellors and nurses trained in genetics, and often keeping close links with laboratory researchers. But it is an organization that has grown up catering for rare disorders such as CF and HD, and not common, multifactorial diseases with a genetic component, which may affect the whole population.
So far, policy-makers have tended to assume that the obvious way to bridge this gap is to update GPs on the new knowledge of human genetics, and get them to advise people about what any new tests might mean. But ask GPs, and most say they are already much too hard-pressed to take on this work. When you recall that the average consultation with a GP lasts a little over five minutes, this is not surprising.
Another answer may be to train more nurses to communicate about genetics, or to integrate genetics with wider health education and public health programmes. Of course, the latter might simply increase demand for genetic advice, and make it harder for the health service to keep pace. Either way, expect to read a good deal more about the need to adapt the health service to make the most of new genetic knowledge, alongside the much more familiar debates about NHS funding and staff recruitment and training.