Ethical Opposition to Cochlear Implants in Congenitally Deaf Children

Cochlear implants are one example in which technological advances have come into direct conflict with cultural values. Others include organ transplantation, gene manipulation, and artificial life-support systems. Cochlear implants, viewed as a medical achievement with the potential to alleviate the loss of a major sensory system by the medical community, represent confirmation to members of the deaf community that they are viewed as inferior and should be eliminated from the population. What appears as a solution to a problem by some is viewed as a "final solution" to a people and a way of life by others. Members and supporters of the deaf world consider those who communicate exclusively through American sign language (ASL) to represent an oppressed linguistic minority. They view attempts to provide hearing to deaf children as racist and geno-cidal.13 Opposition to cochlear implants from members of the deaf world does not arise out of concern that they do not work, but rather that they work well enough to allow the child to reject deaf culture in favor of mainstream society. We have written extensively on this conflict14-17 and summarize those works in this discussion.

In order to understand why cochlear implant technology is perceived as a significant threat by the deaf community, it is important to note that 90% of deaf children are born to hearing parents and 97% have at least one hearing parent.3 If the deaf world is to continue, the children of hearing parents must continue to embrace the language and culture of deafness. Traditionally, this culture and language have been absorbed by deaf children at residential schools where teachers, house parents, and peers are generally themselves members of the deaf community. If parents are given a safe and effective means of enabling their children to remain at home and enter the educational mainstream, many children could be lost to the deaf community. Ultimately, this could have a serious impact on the perpetuation of deaf culture and language. The desire of parents to keep their children at home received national support in the passage by Congress of Public Laws 94-142 and 99-457. These laws ensure that all handicapped children will be educated in the "least restrictive" or most normal environment.

By contrast, deaf world proponents hold the position that children born deaf are ipso facto members of the deaf community and that hearing parents are obliged to allow the child to assume his or her place in that community. This is best accomplished through residential school placement where language, culture, and values are taught by culturally deaf adults, rather than by the parents. This process of "horizontal acculturation" is threatened when children remain in the home and develop the oral language that enables them to be "vertically" accultur-ated by parents, grandparents, and other family members, as is the norm in our society.

Some members of the deaf community believe that hearing parents are not capable of making appropriate decisions for their deaf children since they are not members of the same community and culture. According to Roz Rosen, past president of the National Association for the Deaf, "hearing parents are not qualified to make decisions about implants."18 Harlan Lane, a hearing supporter of deaf culture states that hearing parents are "in a conflict of interest with their own child." Furthermore, he has suggested that a culturally Deaf adult should serve as the child's advocate rather than the parent.13

This conflict leads to two ethical questions: who should decide for the child? and according to what standards should the decision be made? Regardless of the decision to be made, three well-established standards for surrogate decision making should guide the process. First is the advance directive through which the affected individual has made his or her own wishes known as in the use of a living will. Second is substituted judgment, in which someone close to the individual makes a decision based on what he or she knows to reflect the wishes of the affected individual. Members of the deaf world argue that once the child grows up to be a deaf person with deaf culture values, he or she would not want a cochlear implant. By contrast, no one can in reality foresee what the child may ultimately desire as an adult. Neither of these two standards can realistically be applied to young children. The third standard is that of best interest. In this case the surrogate decision maker is expected to choose a course of action that will ultimately be most beneficial to the affected individual. This standard of surrogate decision making is most appropriate in decisions made for young children.

That the family is in the best position to decide what is in the child's best interest is generally a given in medical ethics. It is assumed that because parents bear the responsibility for all aspects of the child's life and will bear the-long term financial and emotional consequences of any decision made, it is the family who will strive to make the decisions that are in fact in the child's best interest overall. According to Buchanan and Brock,19 "there must be a clear locus of authority or decision making will lack coherence, continuity, and accountability." Only someone who has responsibility for all aspects of the child's life can provide that continuity and accountability. Decision making by a culturally deafadult who bears no real responsibility for the child would violate the principle of a clear locus of authority. Only the parents, family, or a legally appointed guardian can fulfill such a role. There is recent evidence that deaf leaders have begun to reconsider and are now willing to concede that the parent is the appropriate surrogate decision maker.20

Given that the cochlear implant works and that parents have the right to choose implantation for their child, the conflict that then arises is between the parties who are trying to influence the parental decision. It is vital that parents, in order to make a decision that is in their child's best interest, do it from a well-informed position. The ethical value of truthfulness must be respected by both proponents and opponents of cochlear implants if parents are to be enabled to make a fully informed decision. Cochlear implant surgeons are ethically responsible to obtain an informed consent from parents in which the risks of the surgery are outlined. It is also incumbent on the parents to ensure that parents have a full understanding of not only the benefits but also the limitations of the technology. Parents must be made fully aware of the intensive rehabilitation necessary if the child is to derive maximum benefit. They must also be aware of the many trips that will be required to the implant center over the years, as well as prepared for the inevitable equipment breakdowns, and probably worst of all, they must be informed that the internal device may fail requiring another surgery in the future. No cochlear implant team, which adheres to standards of medical ethics, would lead parents to believe that the implant is an easy fix. Members of cochlear implant teams should inform parents that there is an alternative lifestyle available to their child that they should explore prior to making a decision.

Proponents of that lifestyle (i.e., members of the deaf world) should as well be truthful with parents about both the pros and the cons that face the child entering their community. Members of the deaf community are bonded by their use of ASL, which is a language separate from English, and not merely English in a manual code. They have their own social and political organizations, participate in Deaf Olympics and Miss Deaf pageants. They marry and raise children and attend churches and theater all within their own ASL-based community. To them it is a rich and rewarding life within, but apart from, mainstream culture.

However, just as with cochlear implants, there are negative aspects associated with acculturation into the deaf world of which parents should be made aware. As has been mentioned earlier, the primary avenue of acculturation into the deaf world is through attendance at residential schools for the deaf. When parents of deaf children visit such schools, they need to be informed that the average reading level of a graduate is approximately third grade, and that three out of four graduates cannot read a newspaper.21 They should also be informed that deafness is associated with the lowest educational level, the lowest family income, the lowest percentage working, and the poorest assessment of well being among all disabilities.22 Parents considering the benefits of the deaf community for their child should be aware of the gap that inevitably develops between the child and his or her extended, if not immediate, family due to an inability to communicate effectively. Other members of the deaf community in effect become the child's family. Although an individual can indeed live a full life as a member of the deaf community, the child's ability to participate in mainstream society is severely limited by the need for an interpreter in all interactions with hearing persons.

Finally, just as it is important for cochlear implant proponents to acknowledge that there are positive aspects of the deaf community, members of the deaf community have an ethical responsibility to stem the flow of misinformation about cochlear implants, which pervades their intracommunity communication sources. Because there is no written form of ASL, many in the deaf community are dependent on informal sources for information about implants (as well as other newsworthy items). Numerous examples of misleading and pejorative statements have fueled opposition to implants among members of the deaf community:

There is absolutely no question that our government has a hidden agenda for deaf children much akin to Nazi experiments on Holocaust victims23 [the surgeon was] eager to use his skills on 17 Deaf individuals... Three died due to complications and one became mentally ill. The rest were failures.24 I feel that cochlear implants are wrong because it makes the recipient a robot with wires sticking out of their head.25

Using deaf children as lab rats and medical guinea pigs is profoundly disturbing.26

None of these statements has any basis in fact, but each has been used as an effective tool in influencing how deaf people view cochlear implants. The ethical value of truthfulness has clearly been violated by these statements.

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