Disabled by Design: Justifying and Limiting Parental Authority to Choose Future Children with Pre-Implantation Genetic Diagnosis.

Abstract

Often, ethical analysis of Pre-Implantation Genetic Diagnosis occupies one of two positions in a moral dichotomy. On the one hand, we have a deep suspicion of the technology as directly leading to eugenics, which is assumed to be a negative consequence; and on the other, we have a vigorous enthusiasm for the technology as a means toward creating better offspring, where "better" is assumed to mean, at minimum, non-disabled. For my part, I eschew both of these positions and attempt to break this dichotomy wide open by maintaining that future parents are not morally required to use PGD to select some vision of an objectively "best" child, but should be permitted to use PGD to select embryos according to their own conception of the good life, even if that conception of the good life includes disability. Yet, I still would not argue that any use of PGD to select a future child to correspond with a particular view of the good life is morally permissible and so we need some way to identify which conceptions of the good life ought to be allowed to motivate prenatal selection without defaulting to a flawed concept of disability as a convenient measuring stick. To achieve this, I will invite moral judgments regarding a future child's likely range of life opportunity that would result from her parents' acting according to their conception of the good life in the context within which she will be raised. However, I reject the notion that this opportunity range should itself be defined only in terms of a socially decontextualized, purely medicalized conception of disability that is so often defined in terms of species normal functioning, so as to be considered equal or normal. Instead, an acceptable opportunity range should include a variety of modes of functioning that can contribute to a broad enough opportunity range if they are reasonably accommodated. In summary, this paper attempts to carve out a position that acknowledges the danger of PGD encouraging simplistic, stigma-based reproductive decision making while also justifying parents' use of PGD to choose embryos that will develop into children with and without disabilities who will flourish in the context in which they are raised.