Within the discussion of genetic responsibility, and especially in relation to pre-conception solutions there is a constant question of the ethical treatment of “possible persons”. With technology and longevity comes a tendency to always look ahead and to seek for methods of control. Science + future forecasting makes prevention of possible people from existing an interesting tool to influence the future of a family (and society at large).
A couple aware of their carrier status and wishing to become parents have a number of options available to enable them to avoid transmitting a mutation to future generations: self-enforced infertility (and adoption), the use of donor gametes, preimplantation genetic diagnosis plus embryo selection or prenatal screening plus selective termination.
All these options can be portrayed as ways to avoid bringing into the world an hypothetical baby who carries their mutation, and will possibly one day develop a life-threatening disease. By never creating this baby, are the parents protecting it from harm? Is the elimination of the potentially ill the moral thing to do? The aversion of the fatal flaw?
According to bioethicist David Heyd, the difficulty is that genesis problems concern possible persons, whereas standard moral frameworks are intended to provide guidance for behaviour that affects actual persons. The only options available to an affected carriers’ baby are non-existence or existence as a mutation carrier. Heyd claims that if the born mutation carrier child prefers life with a potential of illness to not having been born at all, we have no rational basis for claiming that s/he has been harmed or wronged. (Genethics: Moral Issues in the Creation of People, 1992)
In that case, the genetically knowledgeable carrier parents who decided to have an intervention-free biological child cannot be blamed. However, can the moral code flip in the transition between hypothesis and actuality? What is right for the hypothetical person might be seen as wrong when the actual one suffers from illness. On behalf of who’s best interest did the parents act? Can we define this behaviour as kind or selfish?
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