Ethics of Genetically Engineering a Deaf Child: A Case Study

Introduction: Disability, Legislation, and the Case at Hand

The experience of persons with disabilities in the United States is a compelling area of investigation. Legislation has evolved to such an extent that great lengths are taken to give people with disabilities the same professional and social opportunities as the rest of society. As a result, new issues have begun to arise around disabilities, the people who live with them, and the rights that should be granted to them. The case examined here involves deaf parents who wish to genetically alter their reproductive material in order to produce a deaf child.

The first moral issue relevant to the case concerns the deaf community as a whole. The parents are negatively inclined toward Ms. W., despite the fact that she can communicate with them via sign language. This could be seen as an indication that they are inherently biased toward hearing people and assume that members of that group will not understand the concerns and needs of the deaf community.

Deaf Culture and Identity

It is worth considering that deaf people seldom regard themselves as disabled, impaired, or less adequate than hearing people. Indeed, many deaf people regard their condition as a privilege that grants them access to a distinct culture with common concerns and shared interests. In this way, the deaf community functions as a subculture of sorts.

From this point of view, it becomes easier to understand why these parents would like to genetically alter their child to be born deaf. As a member of the deaf community from birth, this child would be able to fully access the privileges and experiences of that culture. The issue, however, is not simply the right of the parents to make decisions about the nature of their child — it is simultaneously a moral, ethical, and legal question.

The parents also hold that their existing hearing child cannot fully participate in deaf culture, and they would therefore prefer a deaf child who can. From their perspective, it is hearing — rather than deafness — that acts as an affliction, isolating their hearing child from the richness of the deaf community.

The Ethics of Genetic Engineering and Designer Babies

In terms of ethics, genetically altering children — even to enhance existing abilities — is a highly contentious issue. The term designer babies has been used to describe procedures intended to determine a child's gender, hair color, skin color, and similar traits. Proponents of such practices argue that it is the right of parents to decide which characteristics they want their children to have, and that genetically engineering traits such as hair color or gender does not harm the unborn fetus or diminish the quality of life the child will enjoy. Opponents, on the other hand, hold that it is unethical to manipulate the natural process of growth and birth in this way, arguing that in-vitro genetic alteration should occur only when the fetus faces serious medical danger or when a condition would be genuinely detrimental to the child's quality of life after birth.

When the case of a deliberately deaf baby is examined through these lenses, a variety of conclusions emerge. If the parents were permitted such an alteration, should this be regarded as their right? Quality of life becomes central here. While a hearing person might regard deafness as a serious affliction, many deaf people do not. As noted above, they often see the condition as a privilege — something that makes them distinct and grants them membership in a meaningful cultural group. From the parents' viewpoint, therefore, deafness is not a problem but a gift.

Conclusion

With all these considerations in mind, it is my view that it would not be advisable to allow these particular parents the right to genetically engineer a deaf child — and this conclusion is reached independent of any judgment about the morality of genetic alteration itself. The concern here is primarily pragmatic and psychological. The parents have demonstrated significant bias toward hearing people; they have indicated that their existing child cannot fully participate in their culture; and they have suggested that a deaf child would be better suited to their family than the hearing child they already have. These factors raise serious concerns for the well-being of the hearing child that exist alongside — and arguably outweigh — the quality-of-life questions facing any prospective deaf child, who would presumably receive full love and support from the parents.

It appears that the parents are not yet seeing the situation from all angles, particularly as it concerns their hearing child. Once they are made aware of all the implications, they should ultimately be allowed the right to choose for themselves. In this way, the most important consideration becomes the well-being of every member of the family — not merely an isolated group within it.