Genetics and DNA Technology: Legal Aspects
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Published By Routledge-Cavendish
and stored, such that they can be defrosted and grown on again later. This is cloning and storage of human cells in exactly the same way that cloning and storage of human embryos is. In many ways they are separated by a distinction without a difference and I would not like to be the person that had to tell a seriously, or even terminally, ill individual that it is not possible to treat them because the only way is to produce immunologically sound material which they will not reject by cloning – and that this is not allowed. It was decided on 15 November 2001 that cloning of embryos for therapeutic research should no longer be licensed, but cloning one for birth apparently is and there are medical practitioners who seem to think that this is a good and practical idea. It is suspected that the incredibly high failure rate of cloned foetuses will mitigate against pursuing human clones. To put numbers on this, of 277 attempts only one sheep, Dolly, was born and further successful examples of animal cloning have been just as hard won. However, failure in this context is not a simple, clear, non-viable embryo; it includes gross malformations and developmental problems. These would not be an acceptable outcome in human cloning. This problem of not thinking about questions on a ‘what if?’ basis before the practical necessity arises is exactly the same situation that seems to have occurred with DNA profiling and genetic testing for disease genes. We have simply not been ready as a society to address questions that are going to have profound effects for future generations. This, sadly, is a general failing. Statements such as ‘think of the children’, have very little power to motivate; what does motivate seems to be political will and commerce. It is true, as discussed earlier, that large numbers are not easily conceived of. What is also true is that long periods of time are not easily comprehended either. So, to take an example from a different science, but one which is very real now and can therefore give us pointers to the future of our ethical problems in genetics, let us consider the question of nuclear waste. We can visualise this not just as a physical problem but an ethical one which is dependent upon society and the good will of society as well. The long term control of nuclear waste is a problem. No matter how it is stored or dealt with it needs to be looked after for a very long time. Given the half-life of some of this material – that is the length of time it takes to reduce its radioactivity by half – the storage times are prodigiously long. It is not unrealistic to say that storage should be in excess of 10,000 years, but no civilisation has been around that long and it would require a great leap of faith to suggest that the current nuclear powers would remain intact, politically stable and financially able to look after such a potential problem for so long. It is to be hoped that humanity is going to out-last nuclear waste, but the questions regarding political stability remain. We simply do not know what sort of a government we will have 1,000 years hence; we do not know what sort of data they will hold about our genes, so now is the time to question their perceived right to hold such information. Now is the time to challenge the perceived right of testers to take samples to find out whatever they like about an individual and possibly pass it on.
An increasing concern amongst geneticists is epidemiological data, as well as personal data, which is then used by insurance companies. This is an immense source of concern for several reasons, but before looking at the reasons for our concern, it would be well to look at the mode of inheritance which many of these genetic disorders follow. Those genetic conditions of which the public is most aware are often inherited in a relatively straightforward way. Among these we can count cystic fibrosis, sickle cell anaemia, Huntington’s chorea and Duchenne muscular dystrophy. The most straightforward inherited condition of these are cystic fibrosis and sickle cell anaemia; you can be an unaffected carrier with one defective gene, but one perfectly normal one which functions correctly and that is all you need. If you should marry another carrier, however, simple patterns of inheritance indicate that the probability of producing an affected child is one in four; the probability of producing a non-carrier child is also one in four. The probability of producing a carrier child is one in two, or 50%. This is a probability, nothing more, so who should have access? When it comes to Huntington’s chorea the situation starts to become a little cloudy and, with further examples which we shall look at, will become very difficult to interpret. Huntington’s chorea is generally considered to be a dominantly inherited condition. But wait, why do the onset of symptoms occur at different times of life and with different rates of progression? Surely this means that it is not just a case of dominant/recessive? But if it was, then it would be easy to define the mode of inheritance. But it is not so easy, even in this case where we can say with certainty that an individual does or does not carry the gene and therefore will or will not have the disease; we are still unable to say when the disease will manifest itself. When it comes to other forms of inheritance the story becomes ever more complicated and the questions which need to be addressed ever more convoluted. A very good example of this is found in breast cancer. It is known that breast cancer is associated with a gene called BRCA1. About 5% of breast cancers are the result of this gene, and about 70% of those women who carry the gene will die as a result before they are 70 years old. But, of course, that leaves us with 30% of carriers who never succumb to the disease. So the question is simple: what protects the lucky 30%? This is unknown and there is no way of predicting if a BRCA1 carrier is in the 70% or 30%. So it is here that the ethical consideration comes in and possibly the legal challenge. Should an insurance company be able either to insist either on an individual having a test, or having had the test voluntarily, be able to insist on seeing the results? I do not think so. No matter what the Association of British Insurers says, its logic is fundamentally flawed. There are two basic reasons for saying this, but it would be well first to look at the manner in which insurance works. When calculating insurance premiums, there are two basic ways in which it is done. The first is called mutuality. This keeps all the people at the same risk together and therefore sharing the costs and consequently an insurance company would like lots of low risk people to maximise profits. This is the situation generally used in America where health insurance for some individuals can be impossible to find because they are perceived to be in a high risk group. The
which a social group or individual thinks is wrong. So the first port of call will be the courts, where we should be able to expect an independent judiciary. However, it is also true that sometimes actions and decisions are taken which, although in themselves not contentious, accumulate along with other legislation to create a highly questionable situation. Note here that the situation becomes questionable: an interpretation of the rules becomes possible which some would simply not agree with. For example, progressive attitudes towards free speech has resulted in the situation being taken advantage of by extreme groups for political ends. There are a number of very specific points which can be made about the use of DNA by society and more especially the construction and use of DNA databases. It is unlikely that anybody would really object to construction of anonymous databases so that we can produce a precise and reliable figure for the probability of finding a DNA profile in the general population by chance alone. What many people do have objections to is the construction of databases of named individuals. Strangely, it would seem that the country that has always been in the van of development of DNA technology is developing a rather poorer reputation for riding roughshod over the rights of its population, the UK. The problems and objections with databases of named individuals start with the practitioners and political will by successive governments. Luckily, there is an outspoken reaction to the UK government’s belief that all uses of DNA are good, but we should be aware that this is not so. Current thinking is that in the future it will be possible to determine facial shape, such as nose type and eye colour, with a simple test. This is put forward as a distinct possibility by the Forensic Science Service, with little regard to the extreme complexity of both the genetics and the environmental input into such things, not to mention plastic surgery. While it was always the belief that rapid turnaround of DNA results would be a good thing, this is only if the techniques are highly controlled. The idea that a hand held machine, as has been suggested, could be taken to a scene of crime and the DNA analysed in situ should fill any self-respecting scientist with horror. It has already been stated that there is a 40% chance of a stain found at a crime scene being linked to a name on the database of named individuals. As databases become larger as well as the number of individuals putting data on the database, so the likelihood of error increases; remember that error in this sense is quite likely to ruin a life. Names get onto databases for perfectly innocent reasons. Two of these are the husband or partner of a rape victim and, which is even more demeaning, the DNA profile of the victim herself. This was admitted in the House of Lords. So why is the British public so lacking in interest or apparently not in the least bit bothered by this staggering lack of feeling for the innocent? There is no mechanism for the removal of a DNA sample from the database after consent has been given. It is of interest here that both the police, forensic scientists and politicians are extremely reluctant to give a sample which can be held on the named database. Why is this? Fear? Fear of what may be done with such intimate information. This includes medical analysis and data which they have no right to access. It would be
