GENETIC RESEARCH
by Rabbi Dr Margaret Jacobi MB PhD

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BACKGROUND
Genetic research has received considerable attention in recent years, as a variety of new techniques has been developed and come to public notice. Its potential has been explored in science reporting and in fiction. However, genetic research itself is not a new phenomenon. Humans have long explored the potential of animal and plant breeding and the complexities of their own genetic inheritance, even if unaware of what genes were. There is evidence that maize was the product of early experiments in plant breeding, created as a new crop some 10,000 years ago. It could be said that the first genetic research described in the Bible is Jacob’s breeding of speckled goats and dark sheep (Genesis 30:25-43).

A great deal more is known now about the mechanisms of inheritance and the composition of genes, and for the first time we have the potential to intervene directly and alter genetic material. This has raised fears and hopes and poses many ethical problems. It is only possible in a short pamphlet to address some of them and suggest ways we might approach their resolution.

OUR APPROACH
As Progressive Jews, we do not believe that the Torah is the direct revelation of God’s word. Rather, we consider that Torah is an ongoing attempt by human beings to understand God’s will. In approaching the ethics of genetic research, we will combine what we can learn from the wisdom of our tradition with modern scientific findings and contemporary understandings of ethics.

We also recognise that the technological issues we are dealing with are peculiar to our time, and could not have been envisaged by the rabbis of the Talmud or the compilers of the great codes of Jewish law. In drawing on traditional Jewish sources for our guidance we realise that they do not address our problems directly and that we can derive only general principles from them.

In general, we will share many concerns with Orthodox Judaism, but some of our emphases and conclusions may differ. For example, we will not be concerned with the implications of genetic research for priestly lineage or the status of mamzer (the offspring of an incestuous or adulterous union who is excluded from marriage within the community; we reject the idea, because it punishes the child for no fault of his or her own). However, issues of consanguinity may concern us because of their implications for health.

We affirm many of the values of Jewish tradition, foremost among them the concept of pikkuach nefesh, the saving of life, which is considered a duty outweighing virtually all others. We also value the duty of p’riyyah u-r’viyyah, procreation, although balancing it against the problem of over-population and other considerations. We affirm the view of our tradition that human beings are partners in the continuing work of creating and improving the world, and so may undertake whatever endeavours seem to help towards this. And we affirm that human beings are not only permitted but obligated to heal, so that any activity which may result in the curing of disease is to be encouraged.

As Progressive Jews, we also find moral philosophy to be helpful in decision-making. For example, the need to balance the principles of beneficence (doing good), non-maleficence (not doing harm), autonomy and justice provides a useful framework for considering problems.

THE ISSUES
Genetic research covers an enormous range of areas. The techniques it is discovering are being applied to bacteria, plants, animals and human beings, and in fields as diverse as agriculture, commerce, pharmaceuticals, veterinary science and medicine. They have already produced new crops, chemicals and treatments for disease. In general, it is probably true to say that the results are unlikely to be as frightening and hazardous as the opponents of such research (and some writers of science fiction) claim, but neither are they likely to be as beneficial as asserted by its most ardent proponents. In the field of medicine, some benefits have already been apparent for several years. For example the synthesis of Human Growth Hormone means that cadaveric extracts of the hormone, which carried the risk of disease, are no longer used.

In all areas of research, there is a need to be aware of the dangers of commercialisation, which might result in financial interests overriding ethical issues and obstructing the general availability of the benefits of such research. There are also other important implications, for example in the area of life insurance.

We will concentrate here on the medical aspects of genetic research as they relate to human beings, but much of our argument can be applied to other types of research. Three areas in particular will be discussed where research is likely to bring benefits, but also raises difficult ethical problems.

GENETIC SCREENING
A large number of genetic diseases (diseases caused by a variant in DNA-1 which results in the manufacture of a faulty protein) occur in human beings, for example haemophilia, muscular dystrophy and Tay-Sachs disease. The genes for such diseases are transmitted by a parent who may be unaffected, but is a ‘carrier’. In some cases, the disease will be transmitted only if both parents are carriers (recessive inheritance), in some if the mother is a carrier (sex-linked inheritance) and in some if either parent is a carrier (dominant inheritance). It is estimated that there are some 40,000 diseases caused by a fault in a single gene. Each individually is rare, but collectively they affect 1-2% of the population. It is possible to detect carriers for a number of diseases. In some cases, for example Huntingdon’s chorea, a fatal neurological disease, it is also possible to detect individuals who carry the abnormal gene and so will develop the disease, but do not yet have symptoms. However, with one or two rare exceptions, most of the diseases are still incurable, and it is therefore important to be clear about what benefits screening might bring.

In the case of parents who are carriers of a recessive disease, it may be possible by premarital screening to avoid the marriage of two carriers. In any case, they may be advised as to the possibilities and screening for affected foetuses may be carried out, followed by termination of pregnancy if desired. This obviously raises questions about the ethics of therapeutic abortion, but that is a separate issue. Here it need only be said that it is generally agreed, even by Orthodox authorities, that for diseases such as Tay-Sachs, where the infant is likely to die a painful death by the age of two, abortion is permissible. However, it cannot be said to be a cure.

Screening may have psychological consequences and also incurs financial costs. The issue of confidentiality is also one which needs a great deal of consideration in order to best protect both those affected and their families.

For screening to be of value, it is important that there should be sufficient provision for counselling and psychological support of any programme, and that it should be focused on likely carriers to reduce the costs. It is also important that one is aware of the accuracy of screening. For example, on the basis of present knowledge, it is possible to detect cystic fibrosis with an accuracy of about 90%. This means that about 10% of carriers will remain undetected, and those screened cannot be definitively assured of a negative result.

In the case of a disease such as Huntingdon’s chorea, where sufferers may be informed that they will develop the disease some years hence, the need for psychological support is even greater. There is evidence that those who wish to be screened can benefit from the knowledge in terms of making future provision, and some people may be reassured that they will not develop the disease.

If adequate support and information are provided and appropriate precautions taken, screening can be valuable in enabling those who are at risk of carrying or suffering from genetic diseases to make appropriate provision and also in some cases offering the enormous reassurance that a negative result may provide.

GENE THERAPY
This is one of the most emotive area of genetic research. It involves the treatment of a genetic defect either by directly correcting the gene concerned or by inserting the correct gene alongside it in every cell which would normally manufacture the product of that gene. This is only possible for a limited number of diseases where a single gene defect has been identified and it is known what chemical change is necessary in order to treat it. It is then theoretically possible to alter either germ cells (cells involved in reproduction, i.e. ova, spermatozoa and their precursors) or somatic cells (any other cells in the body). There is general agreement among the medical profession and lay experts (see the Clothier Report to Parliament, 1992) that alteration of germ cells should not be carried out until we have far more knowledge of the potential benefits and hazards of a treatment whose effects may be passed on from generation to generation. However, somatic therapy is limited to the individual concerned, and should therefore be subject to the same constraints as any other experimental therapy.

Somatic gene therapy has already been successfully carried out for Severe Combined Immuno-deficiency Disease, a rare genetic disorder, affecting about forty children each year world-wide. There has also been considerable progress in a much more common disease, cystic fibrosis, which affects about one in two thousand children in the United Kingdom.

Fears that gene therapy may lead to treatment of ‘conditions’ which are actually personality traits seem remote, since these are not attributable to a single gene, but rather a combination of the effects of several genes, and also environmental factors. Similarly, although a genetic basis is being postulated for other conditions, such as heart disease and various cancers, these are also the result of combinations of factors, and gene therapy alone is unlikely to offer a cure.

In general, we agree with the recommendations of the Clothier report on the advisable developments, limits and regulation of genetic research.

CLONING
Cloning denotes the production of genetically identical organisms or cells. The term covers a range of techniques. Some, e.g. bacterial cloning, have been carried out for some years with little controversy. At the other end of the spectrum, reproductive cloning of human beings has now become a realistic possibility and has consequently attracted considerable publicity. A distinction may be made between reproductive cloning, which produces genetically identical individuals, and techniques which do not have this result but may have therapeutic benefits.

The issues concerning cloning are complex, but there has been a surprising degree of agreement across the Jewish religious spectrum. In general, we should use cloning techniques with caution. However, cell nucleus replacement techniques, which involve growing cells or tissue in culture, may lead to treatment for diseases such as Huntingdon’s Chorea or Parkinson’s Disease. This may involve the use of embryonic cells, as is already permitted in the UK for research under limited circumstances. Since embryonic cells do not have the same status in Jewish law as fully developed human beings, and the saving of human life takes priority, these techniques may be permitted (as a recent Government report-2 suggested), or even welcomed.

Even reproductive cloning may in future be permissible as a treatment for infertility. It is important to realise that if a person develops from a cloned embryo, he or she will still be an individual, in the same way that identical twins, though genetically identical, are different and unique. In cloning an individual, one would not be creating a carbon copy. However, at present there are too many dangers, both ethical and practical. When sheep and other mammals are cloned, a large number of malformed embryos is produced and a high proportion of the offspring die within a few days of birth. The same is likely to apply, probably to a greater extent, in humans. Such a cost would be unacceptable. We also know little of what the psychological effect might be of a child being genetically identically to one of its parents.

The enormous ethical problems associated with reproductive cloning must be fully explored before it is allowed to become a reality.

CONCLUSIONS
The ethical problems that arise from genetic research are profound and wide-ranging. The issues are complex, and the views of experts who can comprehend the scientific implications must be taken into careful consideration. In presenting our conclusions, we acknowledge that they may differ little in terms of general principle from certain Orthodox or secular views, although there will undoubtedly be disagreements over details. This is an encouraging indication that there is broad consensus on the values which should be important to our society in assessing the application of new technology.

Many of the problems relating to genetic research are no different from those relating to medical therapy in general. In assessing them, account must be taken of the balance between the expected benefit and the possible harm to the individual. The financial cost must also be taken into account. However, the cost of research and treatment must be balanced against the cost of the current need for long term and expensive treatment of chronic diseases, and also the cost in terms of suffering. Many of the genetic diseases which may be amenable to treatment are extremely rare, and it is possible that resources would be better employed in the treatment of more common illnesses or in prevention, particularly as evidence accumulates of the link between poverty and ill health. Nevertheless, genetic research has enormous potential to relieve suffering, both through medicine and through its other applications, for example agriculture.

In general we welcome any research which has the potential to save life and improve the world for all its inhabitants, but urge that caution and proper evaluation is carried out in developing new techniques. Genetic research poses challenges to our thinking about ourselves as human beings. It is important to avoid hubris and ‘playing God’. But at the same time, Judaism recognises that we are partners with God in perfecting creation. In responding to the challenges, we need to keep both principles in mind.

Notes:
1. De-oxy ribose nucleic acid, the chemical which encodes genetic information.
2. Cloning Issues in Reproduction, Science and Medicine, HMSO., 1998

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