A Little Genetic Knowledge
is a Dangerous Thing:
Eugenics and the Genetic Revolution

John Scally

Issue 361, vol.91, Spring 2002

The situation is comparatively straightforward with treatable diseases (haemophilia, phenylketonuria). But, to represent the other end of the spectrum, one can focus on Huntington’s Disease - untreatable, hereditary and with no onset until the middle years. Before any test was discovered, 70% of those at risk for Huntington’s said that they would undergo testing; but when a test actually became available, only 17% wished to be tested. Among questions for individuals who test positive, are: do they go ahead and plan a family?; if they have children already, do they tell them the test-result?

Because the whole future shape of genetic screening is so uncertain, ethical questions abound. How, for instance, will criteria be established for the reliability of newly-discovered tests? If a person tests as predisposed to a condition, will a company try to avoid employing him or her - for fear of increasing the company-insurer’s liability? Could insurers eventually refuse all such individuals as clients? Will doctors feel compelled to order every conceivable genetic test, in case they are sued for negligence? Will lending-institutions demand the results of tests, in order to assess a borrower’s exposure to health-risks? Will prospective life-partners demand disclosure of, say, a predisposition to dementia?

Already on the horizon is genetic testing for cancer, cardio-vascular disorders, diabetes, alcoholism, schizophrenia. Are we looking here at vast misappropriation of resources - of funding that might have been better applied, for example, to clearing the workplace of hazardous chemicals?

There is also the question of where the list will end: are we going to see screening for personality and for intelligence?

A wide-ranging public debate needs to be put in train - involving the relevant public authorities and the professional disciplines - regarding the unsuspected implications of genetic testing. The debate cannot avoid beginning with questions like “What makes life human?”, “What is human dignity?”

A code of practice should also be agreed for dealings with the individual requesting the screening. Full information should be supplied at every stage - with genetic counselling available - to ensure that the person is a free agent.

Of course many of the questions arising simply lead back to some ethical issue which is clear-cut and not new in itself. For instance, in cases where a pre-born child is diagnosed as having a serious condition, the parents may be tempted to request an abortion. And there is the situation where people are tempted to resort to a procedure which involves the discarding of embryos (where, for example, a parent - diagnosed as a “carrier” - requests the screening of embryos, produced in vitro with the sole intention of selecting for implantation only one “safe” embryo).

Such issues may seem abstract and of rare occurrence, until we realize just how easily (even before the latest technical advances) the ethos of a modern state could be subverted into espousing eugenics - the doctrinaire planning of a whole programme of selective breeding. In the 1990s one of the proponents of The Human Genome Project suggested that the enterprise would be self-financing by “curing” the problem of schizophrenia, i.e., by terminating the pregnancies shown to be carrying the undiscovered gene for the disease. People are vaguely aware that in Hitler’s Germany measures against “unfit” persons were in favour (and, in fact, some 400,000 covert sterilisations were carried out by X-ray). More surprising are the facts for the United States: by l931, thirty States had compulsory sterilisation laws for “hereditary defectives”; there was a Eugenics Record Office, with two hundred field-workers; and the figure for sterilisations carried out reached 25,000.

Dr John Scally lectures on medical ethics at the Royal College of Surgeons in Ireland and is the author of a number of books on ethics.