Choosing Children: Genes, Disability and Design

This book, based on the Uehiro Lectures I gave at Oxford, returns more than twenty years later, to the genetic choices discussed in What Sort of People Should There Be?. I had more fun with the earlier book, because it was moving into unmapped territory and I could use my imagination to devise scenarios that would probe the issues about the values that should guide the decisions. But this later book has the advantage of being able to draw on our collective experience of how some of these choices have emerged in practice and the ways different societies have responded to them. One of the big issues is about choices for or against having children with disabilities. Do such choices form part of parental reproductive freedom? Or are decisions not to have a child with a disability worryingly like Nazi eugenics? What about the preference some deaf people have for having a child deaf like themselves? Central to this book are questions about disability and about what we owe to our children. For this discussion, one enormous advantage over the older book is the fact that so many people with different kinds of disability have given marvellous, detailed first-person accounts of their lives. The rest of us are now able to learn from them about how their lives feel from inside, instead of speculating from outside. The book tries to relate some of this to the ethical debates about disability and genetic choice.