Abstract to chapter co-authored with Emma A. Jane for the volume “Human Flourishing in an Age of Gene Editing” edited by Erik Parens and Josephine Johnston.
Until recently, genetic diseases and disorders were largely undetectable and difficult to avoid. But with the development of in-vitro fertilisation, genetic screening technologies, and gene editing techniques like CRISPR Cas 9, this may change. Parents may in the future have the option to use such techniques and technologies to create a zygote, inspect its genes, and fix affected ones before the zygote is implanted and begins to grow, so that their child will not be born with serious genetic maladies.
Once this option is on the table, and once it is sufficiently safe, effective, and inexpensive, an unavoidable risk of conceiving a child with a serious genetic medical condition will have transformed into an avoidable risk. When unavoidable risks strike and someone is harmed, we do not usually lay blame. But when people knowingly take easily avoidable serious risks with other people’s lives, that’s different. We call that “recklessness”, we dub them “irresponsible”, and sometimes we even punish them. This may be why women who smoke cigarettes and drink alcohol during pregnancy cop such a rough time from society.
Against this background, this paper asks two harsh-sounding questions. Do aspiring parents have a responsibility to use genetic screening and intervention techniques to ensure that their children are not born with avoidable serious genetic conditions? And if they don’t use them, would they be reckless, irresponsible, by gambling with their children’s lives, risking their potential for a happy and flourishing existence?
We argue that parents should be allowed, though not required, to use these technologies. However, governments should also create environments – through regulation informed by inclusive public debate about disease, disorder, and flourishing – which help us all to make choices that are rational given the transformative effects our choices will have on us and on future generations. Specifically, our environments should help us take into account that the choices we make today may tomorrow create social pressures which make further choices rational, even though those further choices are ones we would rather avoid.