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Constitutional reform?

Constitutional reform? Genetic engineering holds out a promise of prevention or cure for all sorts of diseases — even ones you never dreamed were hereditary. Patricia Spallone reports on the big business gene machine

Scientists have embarked on a project to pinpoint which genes, if any, are responsible for mental illness. Is mental illness hereditary, they want to know. It is one of many projects, small and huge, whose foundation is a genetic hypothesis. On the larger scale, we have the ‘human genome project’ to map and sequence all the human DNA, and gene therapy (gene manipulation in human beings).

The expanding scope of genes-the-cause can be seen in the growing number of physical and mental conditions which are the subject of gene analysis. News headlines from recent years have read: “Genes implicated in breast cancer”; “Multiple genes for manic depression”; “Pair of genes goes awry in bowel cancer”; “Lung cancer gene located”; “Race for cystic fibrosis gene nears end”; and “Faulty gene leads to old age”.

Each of these conditions is unique and complex in its origins and effects, and in its epidemiology — that is, how external influences such as nutrition, infection, environmental toxins, sex, race, standard of living and so on may affect its incidence and prevalence. Yet these very different conditions are gathered under the umbrella of a genetic causation, a vague state of affairs since, for example, the gene marker ‘found’ to be associated with manic depression in a closed community of Amish people in the US was not found elsewhere. For another example, the presence in a person of a gene marker associated with schizophrenia does not necessarily lead to the symptoms known as schizophrenia.

Although few, if any, medical scientists would deny the need to look at the whole context of an illness, the bulk of genetic research does not take environmental and social factors into direct consideration. Instead the approach is focused at the molecular gene manipulation level; then after a genetic link is ‘found’, so will a cure or therapy be obvious. Such an approach tends to overshadow the substantial evidence on other factors of health and illness. Overtly or not, a person’s individual biology becomes a major focus of genetic explanations and genetic cures.

All of this interest, its specific premises and directions, must be understood in the context of biotechnology generally, and its present emphasis on genetic engineering (gene manipulation) capabilities. The promises are grand: genetically engineered drugs like ‘human insulin’; a vaccine for AIDS based on genetically manipulated virus; the discovery of genetic links to all sorts of diseases, ones you never dreamed were genetically based; better diagnoses and cures. These promises require a gene-oriented — or, more precisely, DNA-oriented — medical research and practice.

Whatever truth may or may not lie in the knowledge of genetic links to ill health, the present concentration by scientific and medical research on genetic causes of illness has motivations and effects beyond it. For one, gene medicine is big business, with one estimate that diagnostic gene probes alone will have a market worth of at least US$500m by 1992.

Where will such a genetic hypothesis of illness go? Peter Newmark, in the scientific journal Nature, asked: “What happens when several genetic factors contributing to susceptibility to cardiovascular disease have been identified, a question now the focus of a great deal of research? It should then be possible to categorise groups of people who are at risk, and who could (and should) take preventive steps, but only by some complicated population screening”.

Population screening, of course, requires an institutional organisation of genetic screening services, and with it one can guess, the institutionalisation of an idea. How much free choice would such an institutional effort support, and what of eugenics and the rights of people with disabilities caught under the umbrella of gene ideas and gene ideals?

Last January, the Director of the Imperial Cancer Research Fund and award winning geneticist Sir Walter Bodmer addressed the parliamentary and scientific committee at the Houses of Parliament in London in order to promote the public funding of a human genome project, arguing its ostensible medical benefits.

Genetic science was not primarily about hereditary conditions as we were used to thinking of them, he said, but the mechanisms of cancer and heart disease. He urged a larger British commitment to the human genome project (over and above the millions of pounds of public money the government has already granted scientists working on portions of it).

At the time, the NHS was fighting for its life, having been threatened by government cuts and changes in policy. Social services and care for ill and disabled people were faltering under government policies. Worker’s compensation for disabilities caused by industrial accident had shrunk. At the time, new evidence was emerging that the children of men working at the Sellafield nuclear power plant had a higher chance of contracting leukaemia, and the Ministry of Agriculture was repeatedly advising that the chemical spray Alar, used on apples, was perfectly safe when it had been banned in the US after being directly linked with life-threatening, cancerous tumours.

The ethics of gene therapy are the subject of a government committee examining ‘the implications of the prospect of treating certain conditions’ in this way. In their evidence to that committee, the organisation Consumers for Ethics in Research (CERES), commented on the social risk for people with impairments and disabilities. “Before assuming that ‘defective’ people want to be changed by gene therapy, we need to know far more, through systematic research, about how they would like society to change to suit them”, the group said. They also regarded as a misunderstanding the description of gene therapy as preventive care, saying that preventive care forestalled the development of illnesses and disabilities requiring medical attention, “usually by social means such as adequate diet, housing, unpolluted air and water, health education, and so on”. There is also concern over the wider issues of healthcare provision and the ethics of using human beings — children will be one of the groups most affected — as experimental subjects.

The shifting philosophy of cause and prevention (where genes are the cause, genetic therapy the solution) reflects a bias in the use of genetic engineering for therapy. There seems to be little discussion about the changing direction of clinical medicine, but directions are shifting in research priorities and the way they are integrated in clinical medicine. For example, an Institute of Molecular Medicine replaced the former Nuffield Institute at Oxford with the purpose of applying molecular biology to medicine along the US model, a change vigorously promoted by geneticist Sir David Weatherall, advocate of ‘the new genetics’ in clinical practice.

There is often an overriding sense of despair and concern among those who take care of loved ones with the illnesses, disabilities or impairments now subject to gene-oriented medical research and therapies. That sense of despair, though, is not simply a result of a medical condition as such, but has much to do with the level of support and specialised care which can empower the sufferers and their carers and friends. This may be stating the obvious but health and social welfare services have been seriously undermined and, according to some, policy shifts are shifting consciousness as well, so that health is perceived as an individual problem. (Though I am not suggesting that present government policy and philosophies are steering the course. Gene-oriented medicine serves the interests of financiers, stockholders, hereditarians, frontier science and so on in a complicated web.)

Challenging such gene-oriented medicine is not to deny the significance of the body, or physical or biochemical explanations of things. There are biochemical explanations. Malnutrition may be understood as lack of chemical nutrients which comprise food. Though the biochemistry of nutrition may document conditions of malnutrition on a particular level, it does not explain sufficiently why people are starving, or solve the crisis.

As far as I am concerned, about all that can be certain in the biochemistry of genes is that they are fundamental to the synthesis of proteins in the cells of living things. The correlation with traits and illness is another matter, more complex, ideologically charged.

To find out more about CERES, visit: http://www.ceres.org.uk/