Hoofdstuk V: The status of the human genome: is it ever licit to modify an individual’s genome?

2. Excavation of categories drawn from theology and ethics
An alternative approach might involve the excavation of categories drawn from the disciplines of theology and ethics. For example, Joseph D. Cassidy and Edmund D. Pellegrino, writing in the International Journal of Bioethics (3) have developed their perspective on human gene therapy onder the following six headings: accountable stewardship; preservation and protection of the nature and destiny of humankind; respect for persons never merely the means of human experimentation; equality of ‘value’ of each person and, finally, charitable justice in distribution of resources. This treatment of the issue has obvious strengths and weaknesses. lts key strength lies in the disentangling of themes and ideas, while it suffers from what appears to be a lack a coherent and systematic theological under-pinning. This weakness is in large part due to the severely compressed format of the article, but it does lead to statements which cry out for further clarification. For example: “Biblical stewardship begins in Genesis 1-3 where we are shaped in God’s image so that He shares with us, as His intelligent and free co-workers, the co-operative care and use of creation… God commands everyone (through Adam) to conserve and cultivate (Gen: 15) a creation already adapted to human needs yet still perfectable by our creative efforts. He assigns to us the right preparation thereof by the precepts and practice of the works of mercy (Matthew 25: 34-46). Consequently when Christians employ genetic engineering technology within ethical constraints, they fu1fill the imperative of responsibIe stewardship”. (4)

The italicised terms require considerable unpacking if this statement is to escape a question-begging cul-de-sac. In fairness, Cassidy and Pellegrino are acutely aware that all the resources of the Catbolic tradition will need to be brought te bear on these complex ethical problems. They suggest that: “In this crisis of ethical orientation, the Catholic Church speaks on life’s meaning from a global perspective as the representative of a great moral tradition, capable of shedding light on ‘values’, of suggesting models of reasoning on difficult medical and societal questions and finding articulated solutions to hard cases like the moral applications of engineering the human genome.” (5)

In spite of the spatial constraints, Pellegrino and Cassidy provide a useful and delicate balancing act between ’the desire for learning as a desire for God’, and the ‘priority of ethics over technology’. We are steered towards occupation of the ‘middle ground’ between blind acceptance of every scientific ‘advance’, on the one hand, and total rejection of ‘responsibie and humane scientific progress and therapeutic treatments of genetic disease’ on the other. Pellegrino and Cassidy’s conclusion calls upon us te distinguish the practical virtues of our ability to manipulate the genome, from the moral dangers such artistry may entail, in order to affirm a technology at the service of man. Such an outcome is, for Pellegrino and Cassidy, achievable because those who apply the ‘norms of right reason’ to the field of genetic modification will abjure the subordination of the human person to mere technology.

3. A taxonomy of the problem
The most fruitful approach to this difficult ethical problem of deciding upon the limits of genetic intervention, is to begin by producing a taxonomy of the problem. The more classificatory distinctions developed in the foundations of an analysis, the better the analytical superstructure is likely to be.

Most writers try te distinguish enhancement engineering from mere repair engineering, but specialists tend to distinguish a third category (6) or expand upon caveats. (7) Eijk argues convincingly for the additional category of prevention engineering to cover cases where genomes are modified to prevent future damage. In the bio-medical part of his thesis he discusses the insertion of genes into liver cells of rabbits, encoding the low density lipoprotein receptors on the surface of liver cells, so that they may serve to take up cholesterol from the blood into the liver cell. Later, in the ethical part of this work, he speculates: “Perhaps this procedure could become a therapy for humans who have a deficiency of these receptors, and consequently have a high concentration of cholesterol in their blood, rendering them prone to atherosclerosis, especially ofthe coronary arteries.” (8)

The category of preventive genetic engineering has its place in an accurate taxonomy of the field. Future studies will be clearer if they employ this tripartite system instead of the traditional bipartite one.

Peterson’s insight seems equally valid when he writes: “If one or a combination of the definitions of health and disease that have changing applications is more convincing, there may still be a clear conceptual distinction between cure of disease and enhancement of capacity at any given time, but its application would vary temporally. The line of division would move over time. What would be ruled enhancement of capacity at one time might well fall under cure of disease at a different time … the applied result of the distinction would be conceptually consistent but not fixed in application.” (9)

lt is noteworthy that Eijk does not provide a full discussion of the problem of defining disease but is well aware of the importance of this aspect of the field of inquiry. Gormally claims to be employing a relatively narrow, Aristotelian conception of health according to which health is the ‘wellfunctioning of the bodily organism as a whole’. Usefully, Peterson dedicates over 20 pages to the definitional problem itself (10) – a feat of intellectual honesty which imports analytical humility into the field of view.

Apart from the classifying of ‘objectives’ under the headings of cures, preventions and enhancements, we must also distinguish ’target tissues’ according to whether they are somatic or germ-line. This distinction is now so commonly used that politicians and members of the general public employ it in their discussions of genetic engineering. Some writers have expressed doubts about the supposedly hermetic seal between the two types of tissue on the ground that delivery systems and vectors are so poorly understood and, more importantly, controlled, that a putative somatic treatment might inadvertently result in germ-line changes.