Liberal Jewish Values and Practice Leaflets
Genetic Research by Rabbi Dr Margaret Jacobi MD PhD
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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