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

8. Accepting versus combating every genetic anomaly
How must we consider such conditions as dyslexia and Down’s Syndrome in relation to this observation? Would the parents of already born children affected with these ‘problems’ be unanimously in favour of genetic therapy? Is there not a danger that a scheme conceived as the ‘repair’ or cure of an individual may actua1ly alter the individuality of the person in a radical and symplify unacceptable way?

To push this discussion further we may refer to an unpublished paper written by Michael S. Bates (35) Writing as both the dean of a theological seminary and as the father of a profoundly disabled 14 year-old girl, he brings a unique perspective to bear on the question in hand: “I have proposed (in line with a great host of prominent thinkers in the Church’s history) that God is both all powerful and all good. Therefore, as Creator and sustainer of all that is, He is ultimately responsible for the presence of such things as genetic anomalies. If He is sovereign, which we go forward assuming He must be, such anomalies must be part of His design and ultimately, somehow even for His glory.” (36)

To answer the question ‘Why genetic anomalies?’, Bates posits four possible reasons:
1) For the sake of God’s glory – a hard teaching but a necessary one according to which nothing we experience is meaningless: “We may not see the sweet side of it in this life (Job certainly did not!)… But we can rest absolutely certain that such things are not mistakes nor do they happen by chance.”
2) “God creates some people with genetic anomalies to show us our own brokenness and our need of His grace… such people help us to clarify our vision of ourselves. To realise our differences are only differences of degree, that we are all radically disabled, fosters a sense of humility, which in the 1990’s has a ‘dank and shameful smell to the worldly, the scent of failure, lowliness, and obscurity.” Might not the rush to clear away and cure genetic imperfections, even radical ones, be the child of hubris, a hatred of personal destiny, perhaps even diminishing our receptivity or openness which is consent to death? As Rahner remmds us: “One only reaches the absolute future by way of death’s zero hour, not because the former is death’s gift, not because it could be calculated te be impossible in any other way, but because, beyond all deduction, absolute love was pleased to triumph in its greatest defeat.” (37)

Rahner may have been considering artificial insemination with donor sperm as the target for this remark or perhaps it is meant to confront the spectre of enhancement engineering. But we may not try to apply it to proposals for repair engineering, at least for dilectical purposes.
3) “God creates some people with genetic abnormalities not only for His own glory, and to show us our own brokenness, but also because such disabled people present us the gift of allowing us to serve them unconditionally with no expectation of receiving back.” (38) Must we not be committed to loving all humans as people born Imago Dei, which is first an ontological category, independent of any ability we may or may not have by His grace? We must remember that the immaterial aspect of the Imago Dei is as radically disfigured in any one of us as it is in the most profoundly disabled individual.
4) “God creates some people with genetic anomalies to increase our desire for heaven… Things like genetic anomalies serve as sign posts, reminding us that this world is not our home.”

If the early Hebrews were able to accept joyfully the plundering of their homes and property because they had ‘a better possession and an abiding one’ shouldn’t we be able to store up our misfortunes with equal fortitude?

None of this resonates in the late 20th Century mind, but does it not have theological purchase? Is the individual identity of the unborn child with an extra copy of chromosame 21, repaired, enhanced or obliterated by a genetic engineering procedure to remove the extra chromosome from every cell?

Of course attempting to answer the question why do genetic abnormalities exist, entails a deep study of Theodicy – the problem of reconciling God’s omnipotence and justice with the existence of, in this case, a nonmoral evil and its attendant suffering. Is Bates claiming that God may be seen as the cause of evil and in this way seeking to justify its presence in the world? How radically different wou1d the arguments be employed and the conclusions reached in a system which views such evils as due to privatio boni or total absence of good?

Is it not in fact the case that much suffering degrades without ennobling, and more over fails to bring out the best in others? Might not our chance to serve others unconditionally come to represent an asymmetric self-indulgence which fails to see the person who always has something of himself or herself to give back to the carer?

Indeed, if genetic anomalies are accurately described as non-moral evils do we not have a duty to combat them with every means at our disposal – including genetic engineering. (39)

Jacques Ellul’s term, ‘the technological imperative’ (40) aptly describes our modern disposition of allowing what science can do, to be what science may do. To this unthinking acceptance of the ‘gifts’ of science Michael Bates’ arguments provide a measure of counter-balance.

It must be said that Michael Bates is not opposed to all forms of curative genetic engineering. I have simply used sections of his article to illustrate that a case, for the inviolable uniqueness of the profoundly genetically disabled, could be theologically made. If we set Ronald Cole- Turner’s view that individual genetic enhancements could be adding to God’s great work of creation against this view of each individual’s inviolable uniqueness, we come to appreciate the breadth and depth of disagreement which exists in the modern gen-ethics of genetic engineering. This serves the useful purpose of underlining the importance of writers developing their view out of coherent and systematic theologies and anthropologies.

Only by developing such coherent views will the protagonists avoid the intellectual charge that they are merely making assertions, to support preconceived personal commitments or prejudices, instead of advancing arguments. The quality of 21st century discussions of these key issues will be determined by just how far theologians and ethicists are able to see the essential importance of this. The field is already being ‘fruitfully’ surveyed with considerable creativity – a creativity that will be further enriched if researchers act ‘ecumenically’ (eclectically) is future. The pace of scientific ‘advance’ demands supreme efforts from those addressing these issues and we must hope that some shared sense of mission will therefore emerge:

The answer
The short answer to the question we set ourselves is almost certainly yes, but determining exactly to what extent requires continuing study and attention.