On losing your molecular privacyBMJ 1999; 319 doi: https://doi.org/10.1136/bmj.319.7225.1651 (Published 18 December 1999) Cite this as: BMJ 1999;319:1651
Have you read 1984 lately? If not, don't bother. With surveillance cameras being installed at a frantic pace and personal customer data being traded among companies as a commodity, the vision of permanent surveillance has more or less materialised in our daily lives, leaving Orwell's prose somewhat outdated.
There is, however, a process that may have an even more profound impact. What is it about? The attack on your blueprint, your genes. Forty six years after James Watson and Francis Crick determined the precise structure of deoxyribonucleic acid, DNA, which is the medium that carries all our genetic information, we have come close to the total biological information age. While internet privacy is a hot topic, protection of information about your genetic makeup is not yet considered a major problem. This might be a dangerous misconception Our lives may be changed by biomedical progress more profoundly than by anything else.
Several biomedical advances have been made recently, each of them with potentially disturbing consequences.
There is the human genome project, which will provide us with the complete sequence of the human genome. At the same time, plenty of new genes and their functions are identified each year, and the number is rapidly increasing because fancy new techniques like the so called DNA arrays speed up the process of gene hunting. The combination of both efforts will eventually lead to a detailed map of the human genome, precisely locating each known gene.
In a next step, researchers are interested in minor differences in the genetic code between individuals, which are believed to be responsible for individually different responses to drugs or different natural courses of diseases. To answer those questions, researchers of a biomedical company have obtained permission to investigate medical records and potentially get the DNA sequence of the whole population of Iceland, a country with a common genetic background. This is the first time that genetic and medical data will be comprehensively brought together for a whole people. Though there is no doubt about the tremendous scientific importance of this undertaking, the fact that these data will end up in the hands of a commercial enterprise scares many people. There is a real danger of Iceland ending up being an island of preferred human guinea pigs for all kinds of biomedical studies.
And while there is not yet a similar comprehensive effort in the United States, the gathering of genetic data has begun largely unnoticed Each member of the US military already has to provide a DNA sample Law enforcement agencies encourage parents to acquire DNA samples of their newborn children for identification purposes, should they be the victim of a crime in the future. At present these samples will remain with the parents, but what about the future?
Furthermore, the US attorney general is considering obtaining DNA samples from anybody who is arrested, not only convicts. While all these data are gathered for identification purposes, they can be used in many other ways. With all the new genes being discovered there will soon be individual risk profiles for everyone concerning the predisposition to certain diseases. How will these data be used by employers? To what extent will insurance companies have the right to access them?
The most exciting and also horrifying news came a few months ago. Although this is still considered an experimental procedure, it is now possible to screen embryos generated by in vitro fertilisation for inherited conditions such as sickle cell disease. Though nobody disputes the hardship that is associated with sickle cell syndrome, the far reaching and dangerous implications of such a procedure must not be overlooked, and its benefits have to be carefully weighed against the harm it might cause.
However, it is not entirely clear where the line will be drawn. The genetic basis for an increasing number of diseases has been unravelled, and new data are coming in daily. How will we deal with conditions, such as Alzheimer's, that generally manifest late in life? What about minor birth defects that have no impact on life expectancy or quality of life for those affected? And, finally, what if behavioural patterns, such as homosexuality, are to some extent determined genetically? And, putting ethical considerations aside, what would be the biological consequences of deliberately keeping people with a certain genetic makeup from entering the gene pool?
And what about socioeconomics? Prenatal screening of embryos for defects is expensive. Will the affluent be able to pay for weeding out all genetic flaws among their offspring while the less prosperous are bound to have whatever children God decides to give them?
While there are no universal answers to those questions, it is time to address them urgently. And then, perhaps, Orwell may continue to rest in peace.