Bioethics in genetic medicine

Ethics and Morality

The experience of persons with any disabilities in the United States is interesting to investigate. Legislation has evolved to such an extent that great lengths are pursued in order to give people with disabilities the same opportunities for professional and other pursuits as the rest of society. As a result, new issues have begun to arose around disabilities, the people who suffer from them, and the rights that should be granted to these people. The case examined below relates to the case of deaf parents who are interested in genetically altering their reproductive material in order to produce a deaf baby.

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

As such, it is interesting to consider the fact 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 certain culture with common concerns and interests. In this way, the deaf community becomes a subculture of sorts.

From this point-of-view, it can then be more clearly understood why these parents would like to genetically alter their child to be born deaf. As a deaf child, this person would be able to fully access the privileges and rights of the deaf community. The issue is however not only the right of the parents to make decisions regarding the nature of their child. It is also a moral, ethical and legal issue.

In terms of ethics, genetically altering children even to enhance their existing abilities is a very contentious issue. The term "designer babies" has been used to describe procedures to decide a child's gender, hair color, skin color and the like. Proponents of such practices hold that it is the right of parents to decide which characteristics they would want in their children. Furthermore, genetically engineering a child's hair or gender does not harm to the unborn fetus or to the quality of prospective life to be enjoyed by such a child. On the other hand, others hold that it is unethical to manipulate the natural process of growth and birth in this way. These opponents feel that in-vitro genetic alteration should occur only when the fetus is in serious danger or if an illness could be detrimental to the child's quality of life once born.

When examining the issue of a deaf baby from these points-of-view, one might also come to a variety of conclusions. If the parents were to be allowed such an alteration, should this be regarded as their right? Quality of life becomes an issue here. While a hearing person would regard deafness as a terrible affliction, many deaf people do not. As mentioned above, they rather see the condition as a privilege; something that makes them special and allows them certain rights in terms of the cultural group. Thus, from the parents' viewpoint, deafness is not a problem.

Furthermore, the parents hold that their existing hearing child cannot fully participate in the deaf culture, and they would like a deaf child who can. From this point-of-view, the parents regard hearing rather than deafness as an affliction that isolates their hearing child from the richness of the deaf community.

A third issue that could be examined is the law.

Deaf persons are provided with certain rights in terms of work and study opportunities, and the like. If a child is however deliberately made deaf before birth, this could result in a perception that the parents were concerned with taking advantage of such rights rather like destroying one's own property in order to collect the insurance.

The above-mentioned are issues that need to be considered in terms of morality, ethics and the law before a decision can be reached. An integration of complicated issues are involved in this case. Firstly, the parents and their commitment to the deaf community need to be considered. Their hostility towards the hearing Ms. W. is an indication of their general attitude towards the hearing community. Ms. W. feels that she is regarded as a person who would prefer to eradicate the deaf community altogether. The parents appear to be unfairly biased towards her as a hearing person in this regard.

With this hostility, the parents appear to deliberately separate themselves from the hearing community. It could be an indication of what they have perceived from the hearing community itself. Hence they might perceive the entire hearing community as isolated and unwilling to understand the concerns of the deaf community. This is then an attitude that they translate to their interview with Ms. W, although certainly it is not true that she wishes to eradicate deaf people. As such, the attitude manifests itself in the same vein as an extreme form of racism or other type of bias. In fact, it is reminiscent of the paradigm according to which a colored person may blame all his misfortunes on racism, whether this be justified or not.

In this light, it is necessary to closely examine the parents' wish to have a deaf child. Most likely these parents will impose their own values and judgments upon the consciousness of the child. Such extreme hostility may isolate the child from the hearing community, defeating the rights and privileges that the child may indeed enjoy under the law.

The issue of the law is mentioned above, and may also be seen in relation to quality of life. Assuming the parents' point-of-view, deafness from birth may not actively harm the child, as the child would know no other mode of existence. Nevertheless, the child may be harmed in terms of legal issues. For example, when the child becomes old enough to claim legal rights and privileges, the issue of choice may be raised in court cases relating to the birth of the child. It might be argued that a choice to be deaf (even if made by the parents for the child) precludes this person from the rights provided to those with disabilities. Indeed, the view of deafness not as a disability, but as a culture, may then also be an issue used to substantiate a denial of rights for the disabled. Such problems may bring challenges for a child who might otherwise have enjoyed a greater quality of life. Even when not considered disabled or harmed in any way because of the deafness itself, a contrived condition of this nature may have unforeseen repercussions that does impact upon a child's quality of life.

Another issue that needs to be considered in terms of attitude, hostility and the deaf culture is the already existing child, who can hear. If the parents were to produce a deaf child, what would be the implication for the hearing offspring? The parents claim that the hearing child cannot fully enjoy or be part of the deaf community, as a deaf child would be able to. This smacks of regarding the first child as "defective" in terms of the deaf culture and ability to share that culture. The parents then appear to regard deafness as a requirement for being able to share the culture. This is also indicated by their attitude towards Ms. W., despite the fact that she has made every effort to connect and communicate with them in a courteous manner. It should be considered that such an attitude would bias the parents unfairly towards the deaf child, while isolating the hearing child. Concomitantly, the deaf child may also be taught bias towards the hearing child, resulting in a type of "ganging-up" effect against the single member of the family who can hear.

With all these considerations in mind, it is my view that it would not be a very good idea to allow these particular parents the right to genetically engineer a deaf child. This is regardless of the morality of using such genetic alteration in the first place. I am considering the issue from a purely pragmatic and psychological point-of-view. My concerns are as follows: 1) the parents have demonstrated bias towards hearing people; 2)they have gone as far as indicating that their existing child cannot fully participate in their culture; 3)they claim that a deaf child would be better able to do so and hence be better for them than the hearing child. I am therefore more concerned with the well-being of the existing child than with potential life quality issues for the deaf child. The desired deaf child will obviously receive love and support from the parents.