Through ethical reflection, humanity can now keep pace with the challenges of science instead of realizing too late when things have gone wrong
Scientific research on the human genome, and especially on gene therapy and the diagnosis of genetic diseases, has far-reaching implications for the lives of all of us--children, men and women alike. It is a field holding out immense prospects for man's self-transformation and it will, in the long run, require societies to make certain choices. As a result, it is giving rise to anxieties that may in some cases be justified but are more often irrational.
These anxieties lie behind the effort many countries are now making to look into the ethical framework of such research. Legislation is starting to be adopted to define limits for medical practice and some types of research, in order to ensure that human dignity will be respected. Two points must be stressed, however. In the first place, the type of legislation differs significantly from one country to another and we do not have any common yardstick to judge it by. Secondly, it does not exist everywhere in the world, but only in some of the industrial countries. Elsewhere, there are are still a number of grey areas surrounding research and experimentation.
It is for all these reasons that the Director-General of UNESCO decided to set up an International Bioethics Committee and invited Ms. Noelle Lenoir, a member of the Constitutional Council of the French Republic, to preside over its deliberations.
The Committee met for the first time in September 1993 and commenced its work by identifying three priority themes. These are genetic screening and testing, the therapeutic applications of genetics research, and population genetics.
Should genetic screening be made compulsory for so-called "risk" populations or should it simply be made available to them? Should it be introduced into premarital examinations or be included in prenatal diagnosis ? Should it be carried out before gamete donation or the implantation of embryos fertilized in vitro?
At the outset, a distinction must be made between two kinds of genetic tests. Tests in the first category are used to identify a particular gene which is virtually certain to bring on a hereditary disease. Those in the second category show whether or not a person has a predisposition to certain diseases and thus reveal situations involving varying degrees of probability. Depending on the environment and sundry other factors, about some of which little is known, the outward symptoms of a disease may appear in its early stages or may emerge only later, and the disease itself may vary in severity. A genetic mutation may become more dominant and grow worse from generation to generation. On the other hand, the tendency for genetic damage to occur may be reversed. In short, the same defect in a person's genotype (genetic constitution) may take different forms in his or her phenotype (the physical constitution as it interacts with the environment).
This influence of the environment on the form a genetic mutation may take brings into play the concept of the responsibility of individuals towards themselves and their families and the responsiblity of citizens towards the community. Preventive medicine could therefore be said to go hand-in-hand with predictive medicine.
Should people be told that there is a probability that they will eventually develop Huntington's chorea, for example, and transmit it to their offspring? Should their close or distant relatives be warned? What about employers and insurance companies? Can a company's medical service insist on being given the results of genetic testing?
Since genetic testing may extend over several generations and involve varying numbers of individuals, questions about the storage and confidentiality of the data are bound to arise sooner or later. How long should genetic data be kept and how can its confidentiality be guaranteed? …