Chapter Six BEHIND THE SCREEN
If, by chance, you are reading this book on a train, or in a library, or anywhere apart from in solitude, steal a glance at the person to your left and to your right. Then, comfort yourself with the knowledge that two of the three of you will die as a result of errors in (or side-effects of) the genes you carry. Should that idea be unwelcome, it is worth remembering that a century ago, in that train or library (and depending on the age of your companions) two of the three of you would be dead already.
Life, towards the end of the second millennium, underwent a great change. A British baby born today who lives through the difficult first six months has only about one chance in a hundred of failing to make it to adulthood. In Victorian times — and long before — the figure was, for most newborns, about one in two. In those days, death came from outside: from starvation, infection, or cold. The eugenicists were concerned about the inborn weaknesses of future generations, but in fact most of their fellow citizens died for reasons not directly connected with their genes. Now things are different: we have won the battle against the external world and face the enemy within; our innate failings, central as they are to ailments such as heart disease, diabetes or cancer. As a result, most of us nowadays die of a genetic disease (although not many notice). Genes impinge upon us more than they did in Galton's time and our new ability to read their message may alter lives and deaths in unexpected ways.
Both Galton's Laboratory for National Eugenics and Davenport's Eugenics Records Office (which changed its identity through a merger with the Cold Spring Harbor Laboratory) are now world centres for human genetics. They and the hundreds of research groups that descend from them have come up with the technology for searching out genetic imperfection thut (I.ilion and Davenport lacked. Many of the questions ih.it obsessed ilu- biologists of a century ago have been answered. What is the relationship between people and genes now that we may soon have the tools to identify the inadequate and to carry out some kind of eugenical programme if one was called for? Will we screen all babies at birth; or is that a step too far?
No serious scientist has any interest in a genetically planned society. But the explosion in genetics means that, like it or not, we must face ethical problems of the kind so comprehensively ignored by its founders. Can, or should, choices be made on the basis of DNA? What is the balance between the rights of individuals and of society in the light of the new biology; and is there any need to worry — as the eugenicists thought — about those of unborn generations? One intellectual hero, Sam Goldwyn, dismissed the issue by asking 'what did posterity ever do for me?', but his predecessor, Plato, saw a moral duty to the future in that 'mankind gains its hope of immortality by having children7. To interfere with the genes of the present has an effect on that future and to diagnose an error in one individual at once draws in his family; those alive and those yet to be. Where should the duties of science end?
Genetics has undergone a healthy shift in attitude. Most of its practitioners are not concerned with the quality of the distant future. They feel responsible to people rather than to populations; to today and not to tomorrow. Biologists are, indeed, more cautious about their work than is the public. In one poll three out of four Americans found the idea of inserting genes into human sperm or egg quite acceptable but almost no scientist would contemplate the idea.
In the nineteenth century the bacterial theory revolutionized medicine. Some hope that DNA will do the same in the twenty-first. Genetics might help to predict disease before symptoms appear, prevent it before damage is done or even cure it by molecular microsurgery. Whether or not it succeeds, it will reveal many secrets. DNA may have shattered Plato's notion of the perfect human, but reminds us of his notion that men may be classified by their very nature — not just into those of gold, silver, iron and brass; but into thousands of classes, each at risk of certain diseases, of certain environments, and each, perhaps, endowed with some unique and inborn talent. Are we ready to expose the skeletons hidden in every genetical cupboard? Mass screens for genetic defects are in the air (with the British government among the first to offer its population for the task). The eugenicists would have been happy with the idea and libertarians are alarmed; but now it seems that the job may be more difficult than anyone had hoped — or feared.
For much of the time genetics deals with healthy people, either carriers of single copies of recessive genes, or those with damaged DNA that might affect their future health. By so doing, it draws more and more under the aegis of medicine. Genetics was once a science of the exceptions. Dreadful as inherited disease might be for the families involved, it did not seem to impose upon most people. Genes are responsible for severe inborn defects, but most are impossible to treat (so that those affected die young) and each is rare. With an overall incidence of one or two in a hundred live births, genetic problems seem a minor part of the history of death; crucial to a few, but irrelevant to the many. For such rare diseases rests do pay, to use that term in its crudest sense, because of the effectiveness of pre-natal diagnosis and pregnancy termination. In Holland the national counselling service costs about thirty million pounds a year. It prevents the birth of from eight hundred to twice that number of severely handicapped children. Even in that small and efficient system, the expense of their lifetime healthcare would be between about.1 tjuarrer and three-quarters of a billion pounds. For Untjiii, with a population four times as great, the figures must be multiplied in proportion. In the United States, for fragile X syndrome (a common cause of inborn mental defect) the cost of prevention of a single birth is $12, 000 compared to the million-dollar cost of support.
Such calculations sound offensive, or even brutal, but equations like these are commonplace in medicine. To balance cash against quality and length of life is unavoidable; and the sums may be stark. Even so, given that so many single-gene conditions cannot be treated and that many of the others demand permanent care, they are relatively simple to cost. At first sight, and forgetting any moral dimension, the equations seem clear, both for pre-natal diagnosis and for the care of those born with an inherited illness. For genetics, though, costs and benefits have ambiguities of their own. Now that DNA has entered the domain of common diseases it will allow early diagnosis of conditions, treatable and not, that come on in later years. As it does so it may produce a whole new social class, the healthy ill, who — hale and hearty as they are until the fate coded into their genes makes its presence felt — turn to doctors for help that they cannot give.
The biggest difficulty may prove to be diagnosis by proxy, the inadvertent discovery that a third party, a relative, is at risk. Should doctors inform other family members, even those outside their own care, of their situ- ation? Already physicians have been sued for not telling relatives of a death from inherited colon cancer because the information might have allowed them to protect themselves. In the USA some states see doctors as responsible for informing the wife of a psychopath of her own risk and insist that physicians must tell the rest of the family about inherited disease. Others feel that to inform the patient is enough and leave it to him what he does (the practice recommended by a British Select Committee). Most people, when asked, agree that relatives should be told about inborn conditions and this may become common practice — which changes the normal taws of confidentiality. And how long must a hospital keep in contact with a patient? As more accurate tests emerge, as they will, those who once scored negative on a DNA checkup might then not do so.