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Editorial Reviews. About the Author. Sheila A.M. McLean is from the University of Glasgow, Genetics and Gene Therapy (The International Library of Medicine, Ethics and Law) 1st Edition, Kindle Edition. by Sheila A.M. McLean (Editor).
Table of contents
It is primarily in regard to genetic testing that the human genome project gives rise to concern about ethics and human values. The identification, cloning and sequencing of new genes without first needing to know their protein products greatly expand the possible scope for screening and diagnostic tests.
The central objective of genetic screening and diagnosis should always be to safeguard the welfare of the person tested: test results must always be protected against unconsented disclosure, confidentiality must be ensured at all costs, and adequate counselling must be provided. Physicians and others who counsel should endeavour to ensure that all those concerned understand the difference between being the carrier of a defective gene and having the corresponding genetic disease.
In autosomal recessive conditions the health of carriers heterozygotes is usually not affected by their having a single copy of the disease gene; in dominant disorders, what is of concern is the manifestation of the disease, not the mere presence of the defective gene, especially when years may elapse between the results of a genetic test and the manifestation of the disease. The genome project will produce knowledge of relevance to human gene therapy, which will very soon be clinically applicable to a few rare but very burdensome recessive disorders. Alterations in somatic cells, which will affect only the DNA of the treated individual, should be evaluated like other innovative therapies.
Particular attention by independent ethical review committees is necessary, especially when gene therapy involves children, as it will for many of the disorders in question. Interventions should be limited to conditions that cause significant disability and not employed merely to enhance or suppress cosmetic, behavioural or cognitive characteristics unrelated to any recognized human disease. The modification of human germ cells for therapeutic or preventive purposes would be technically much more difficult than that of somatic cells and is not at present in prospect.
Such therapy might, however, be the only means of treating certain conditions, so continued discussion of both its technical and its ethical aspects is essential. Before germ-line therapy is undertaken, its safety must be very well established, for changes in germ cells would affect the descendants of patients. Genetic researchers and therapists have a strong responsibility to ensure that the techniques they develop are used ethically.
By insisting on truly voluntary programmes designed to benefit directly those involved, they can ensure that no precedents are set for eugenic programmes or other misuse of the techniques by the State or by private parties.
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One means of ensuring the setting and observance of ethical standards is continuous multidisciplinary and transcultural dialogue. The needs of developing countries should receive special attention to ensure that they obtain their due share of the benefits that ensue from the human genome project.
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