On November 2, Center Professor Len Fleck, PhD, spoke at the Grace A. Dow Memorial Library in Midland, MI as part of a community engagement project. Dr. Fleck’s presentation, “From Chance to Choice: Genetics, Ethics, and the Future of Human Reproduction,” is summarized below. The premise for this presentation was a comment by Philip Kitcher in his book Lives to Come: The Genetic Revolution and Human Possibilities. His comment was that we had exited the age of genetic innocence and were now in the age of genetic responsibility (from which we could not exit).
Kitcher wrote that comment more than twenty years ago, when that comment still had a futuristic tinge to it. Today we are solidly in the age of genetic responsibility. Thirty years ago, future possible parents had to conceive “in fear and trembling” (to quote Soren Kierkegaard). They had no idea what genetic risks they might impose upon their future possible children. If a child was born with a serious, life-threatening genetic disorder, this was unfortunate, but no one was ethically blameworthy for that outcome. Today, with the availability of whole genome sequencing for about $1000, a couple can find out whether or not they might pose some serious genetic risk to their future possible children, along with alternative reproductive options that might allow them to bypass that risk, such as pre-implantation genetic diagnosis of eight-cell embryos conceived in vitro. With that new knowledge (or possibility for knowledge) comes new responsibility.
What sort of responsibilities might these future possible parents have? They might chose to have their children in the usual way. A liberal, pluralistic democratic society would be politically obligated to respect such a choice because these parents have both privacy rights and procreative liberty rights. This might mean a child will be born with cystic fibrosis, and all the health costs associated with that. That same liberal, pluralistic society will have obligations of justice and beneficence to provide the care (at social expense) needed by that child to have as good a life as possible (even though some taxpayers might object to paying for avoidable health care expenses).
There will also be many in our society who will object to permitting other future possible parents availing themselves of pre-implantation genetic diagnosis (PGD), which will involve the creation and discarding of some number of excess embryos carrying a serious genetic defect. However, this too is a liberty right and privacy right of these parents, which advocates for a Right to Life position may not justly deny these parents. Further, the cost of having a child via PGD will be about $40,000. This is a cost that might also require public financial support, which would be a matter of social genetic responsibility. Right to Life advocates might object to paying taxes to support an intervention to which they deeply conscientiously object. Still, this is what they are ethically and politically obligated to do. This is a matter of reciprocity, what the political philosopher, John Rawls, refers to as fair terms of cooperation.
In the future we will see our capacity to do gene editing at the embryonic level successfully evolve, which will require yet more ethical analysis of what this means for parental and social responsibility. It will also politically require much more mutual respect for diverse understandings of responsible reproductive decision making, which is what the ideals of a liberal, pluralistic society justly expects.