The readers of this newsletter, most of whom will be members of the Galton Institute, are well aware of the importance of genetics in any attempt at a comprehensive understanding of society; I can take this as common ground. It therefore seems appropriate to raise for discussion in these pages the issue of ‘‘geneticisation’’. This term, coined (I believe) by Abby Lippman of McGill University, Montreal, refers to the growing tendency to describe health and disease, the causes and the cures of illness, in genetic terms (Lippman, 1991 and 1992). This tendency had been discussed earlier by Yoxen (1982); while acknowledging the evidently physical basis of genetics, the increasing dominance of molecular genetic explanations for disease and for differences between people is necessarily a social phenomenon. Geneticisation may be regarded as the extension to genetics of the concept of ‘‘medicalization’’ of sickness and disease (Zola, 1972).
In so far as ‘‘geneticisation’’ encourages a realistic view of disease, and helps both public and professionals to appreciate the biological limitations of any programme to improve public health, it is to be commended. However, Lippman is concerned lest ‘‘geneticisation’’ ousts other modes of understanding, impoverishes our comprehension of health issues, and consequently renders inappropriate or even counterproductive our planned remedies for the ills we have identified.
One way in which ‘‘geneticisation’’ might be unhelpful to public health is the possible development of detailed genetic susceptibility analysis for individuals. For the common adult diseases in Britain, such as ischaemic heart disease, hypertension, diabetes, cancers and stroke, an individual’s risk profile may soon be requested as an aid to health promotion. Testing for other susceptibilities such as the risk of developing liver disease from alcohol, or of lung cancer from smoking, may also soon be available. However, if we focus attention on health promotion at this individual level, we introduce problems. First, there is likely to be social inequity in both the provision of such testing and in the motivation and the financial means to comply with the advice given. Second, while armies of scientists, insurance clerks, solicitors and health care workers would be given employment by such testing, the resources consumed would benefit only a minority of the population; equivalent resources devoted to a food pricing policy that encouraged a healthy diet, and towards the reduction of alcohol and tobacco consumption by society as a whole, would benefit almost everyone and would be much simpler. For any given realistic level of expenditure available, would not such a public health promotion policy make better sense? Furthermore, our reduction in imports of tobacco and other cash crops from developing countries may assist the peoples of those countries in their attempts to develop themselves, without excessive interference from tobacco (and other such) corporations.
An analogy exists with another major cause of mortality and morbidity in childhood and young adults: road traffic accidents. Here again, prevention at the individual level, as with the use of seat-belts, can only achieve limited improvements. Further reductions in casualties would require a shift in public policy concerning road use, with attention to speed limits, alcohol consumption and the promotion of railway and other public transport systems. Individualising the solutions to such failures of public policy in the sphere of health is a recipe for the generation of further inequalities, with improvements being achieved for those who (can afford to) participate in the culture of individual enterprise, but not for society as a whole.
Another area of medicine in which the influence of genetic factors has long been recognised is that of mental and physical disability. That is why genetic counselling of families, who have had at least one member affected by a possibly genetic disorder, has become increasingly available; indeed, this is how I am employed. However, the focus upon genetic causes of disability, and the perception that nothing can be done for other causes of disability while the genetic causes of disability can be prevented (by prenatal diagnosis and the selective termination of pregnancies), may lead to unanticipated and undesirable social consequences.
The routine antenatal screening programmes for the identification of neural tube defects (spina bifida and anencephaly) and Down syndrome by maternal serum screening, and for the detection of malformation by fetal ultrasound scanning, are often justified as providing reassurance to mothers that their fetus is healthy, and as providing the option of choice between at least two possible options if a fetus is found to be affected (to continue the pregnancy or to terminate it). What is not at all clear, is how many of the women who participate in these screening programmes experience them as providing reassurance and choice, and how many participate because the tests are presented as a routine, or because they fail to voice objections that (they fear) would be regarded as irresponsible.
If the aim of such screening programmes is to offer reassurance, another way of achieving this may be to provide better resources for the antenatal care of pregnant women (in nutrition, for example); the incidence of low birth-weight infants and of neural tube defects may be reduced by such nutritional programmes. Again, better resources may be provided for the medical care, the education and the social support that is available to families with disabled members. One of the reasons why some mothers choose to terminate pregnancies in which the fetus has a genetic disorder, is their concern that society will not offer their child a good life. For these women, the reassurance that society would help the family shoulder the burden of a child with disabilities, and would take over the child’s care as the parents age, might be more welcome than genetic screening and the offer of a termination of pregnancy. If society does not engender confidence that a child with a disability will be offered comprehensive medical, educational and social support, and that the affected person will not be stigmatised or the parents branded as ‘‘irresponsible’’; if these conditions are not met, then to what extent can the choice be regarded as a ‘‘free’’ choice made on personal, moral grounds ?
By concentrating attention and resources upon the genetic factors contributing to disabilities, are we making it more difficult for affected individuals to receive proper care and to lead a decent life? Will society’s decision to follow this path lead to increased social intolerance of those with genetic disease? And of their ‘‘irresponsible’’ parents ? And of others with non-genetic disabilities? And to reduced social provision for all the disabled?
In developing countries, public health may be improved more readily by the provision of primary school education for girls, and the ready availability of clean water, immunisation programmes and of contraception, than by pharmaceutical remedies for tropical diseases. In a similar way, may not overall public health and ‘‘happiness’’ in developed countries, judged on some utilitarian calculus, be more readily enhanced by the allocation of resources to social care programs for the disabled than to genetic research into the aetiology of genetic causes of disability? This is not to doubt the biological worth of such research, but it is important to distinguish the scientifically interesting from the socially applicable.
In this brief paper, I am arguing for caution in the application of genetic knowledge to the promotion of social change. Attempts to reduce the birth incidence of children with certain disabilities may have undesirable social effects, and the supposed benefits of ‘‘reproductive choice’’ may not always be experienced as such in practice, and may damage the interests of those with all forms of disability. Attempts to improve public health by providing individuals with detailed analyses of their susceptibilities to environmental agents and to common diseases (at least, for those individuals who can pay), may increase inequalities in health and may consume more resources to less overall benefit than the adoption of national health-promoting policies on nutrition, alcohol, tobacco and transport. The continued expansion of genetic knowledge is of great interest and importance, but its application to society must be considered carefully to ensure that the consequences of this application are truly beneficial.
Angus Clarke, Cardiff
References
Lippman A (1991) Prenatal genetic testing and screening:constructing needs and reinforcing inequities. Am J Law and Med. 17: 15-50
Lippman A (1992) Mother matters: a fresh look at prenatal genetic testing. Issues in Reproductive and Genetic Engineering 5: 141-154
Yoxen E J (1982) Constructing genetic diseases. In ‘‘The Problem of Medical Knowledge’’ eds. Wright P and Treacher A, Edinburgh University Press.
Zola IK (1972) Medicine as an institution of social control. Sociological Review 20: 487-504.