Document Type

Article

Publication Date

1997

Publication Title

Rutgers Law Journal

Keywords

Human Genome Project, genetics, child's right to an open future, autonomy, deafness, sex selection

Abstract

In this paper, I examine three difficult issues raised by the Human Genome Project, and lay out an approach that takes seriously the interests of the child, present or future, while preserving the traditional commitment of professional geneticists to patient autonomy. The approach I take is based on Joel Feinberg's concept of "the child's right to an open future." In Part II, I describe the Human Genome Project, as well as the advances in assisted reproduction which give people ways to make use of the information engendered by the HGP. In Part III, I discuss the ethics of medical genetics, especially the primacy of client autonomy and how it grounds the tenets of value neutrality and nondirective counseling. I describe three current issues that pose challenges to a professional ethic of value neturality: (1) disabled parents who seek assistance in ensuring the birth of a child who shares their disability (e.g. hereditary deafness or dwarfism); (2) predictive testing of children for adult-onset genetic disorders; (3) sex selection. In Part IV, the heart of the paper, I construct a new approach to dealing with these issues, based on Feinberg's concept of a child's right to an open future. I argue that these issues should not be conceptualized as balancing parental autonomy against the welfare of the child, but as balancing parental autonomy against the autonomy (right to an open future) of the child, and I explain why this approach is more likely to yield constructive results. I then return to those questions in greater detail, showing how the issues in Part III fare when subjected to the scrutiny of an approach based on the child's right to an open future. Thus in Part V, I discuss the case of deaf parents who ask for assistance in making sure that they have only deaf children. In Part VII I discuss parents who wish to select the sex of their offspring.

Volume

28

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