Quest for a deaf child: Ethics and genetics

Abstract

This project investigates the question of whether it is morally justifiable to use genetic technology in order to bear a deaf child. Even though it may seem counterintuitive to hearing people, deaf people often desire to have deaf children. Reasons for this vary, but often include a deep longing to have a child who can fully participate in one's linguistic and cultural community. Many view using genetic technology to ensure or create a child with a disability as harmful and a dereliction of parental duty; dismissing the desire for a deaf child as misguided at best. I begin by situating this desire for a deaf child in historical context, identifying and analyzing ethical claims regarding deaf education, eugenics, civil rights, and cochlear implant surgery. Following this, three arguments are analyzed to consider whether, in certain situations, it may be morally justifiable to use genetic technology to bear deaf children. The first is a consequentialist approach to genetic selection, using a variation of the Non-Identity argument to evaluate the potential harms and benefits to the child who is born deaf. For genetic alteration, I evaluate an argument with roots in deontology that considers the notion of bodily integrity as a principle of human dignity and autonomy, expanding it to include genomic integrity. The final chapter considers the question of deafness as a moral harm, including the question of harm within the family unit and harm to society.

I consider two major objections to these arguments: the child's right to an open future, and conditions of exit. In the right to an open future argument, parents have a duty to ensure that undue restrictions are not placed on the child's future. The conditions of exit argument asserts that parents have a duty to protect a child's potential future interest in exiting her cultural community. I conclude that these objections rightfully present challenges to the three arguments I consider, but are currently insufficient to fully overcome them and need further refinement.