Cochlear Implants in Children: Ethics and Choices

CHAPTER 11. Ethics and Choices: Ongoing Dilemma

290 CHAPTER 11 Ethics and Choices: Ongoing Dilemma The question of whether parents have a right to implant a child without the child’s consent, or whether they should wait until the child is old enough to decide, hits at the heart of the pediatric implant debate. Experts viewing the same research data often come to diametrically opposed conclusions regarding the ethics of the procedure . Arguments for or against pediatric implantation on ethical principles are played out in various publications and in the public arena. An article in Silent News, for example, captures the essence of this dilemma. In reporting on an exchange of opinions during a panel discussion following the showing of the documentary, Sound and Fury (Aronson, 1999),1 Drolsbaugh (2000, p. 7) writes: Dr. Harlan Lane, noted author of Mask of Benevolence and distinguished professor at Northeastern University, presented a number of research findings opposing the cochlear implant. 1. In this film, one deaf brother, Peter Artinian, vehemently rejects the implant for his deaf daughter (after initially considering implantation possibilities), whereas his hearing brother, Chris Artinian, who has married a hearing daughter of signing deaf parents, proceeds to have his deaf twin son implanted. ETHICS AND CHOICES: ONGOING DILEMMA 291 Immediately afterward, Dr. Pat Chute, a cochlear implant audiologist , challenged Dr. Lane’s views with statistics and counterarguments of her own.Watching the two of them slug it out, you could appreciate how difficult it is when hearing parents try to make decisions on how to raise deaf children. This panel discussion also included members of the Artinian family (featured in the film Sound and Fury), who have chosen either one or the other side in the debate. Afterward, the audience was asked to indicate whether the program had changed anyone’s mind. Only one person in the audience raised her hand.Granted, many people may not have been willing to publicly acknowledge a change of opinions. Nonetheless, this suggests that people may not change views easily on the issue of pediatric implantation, especially when emotions run high. Ethics What do we mean when we talk about ethics? Ethics are moral principles adopted by an individual or group to provide rules for appropriate conduct.Morality in general refers to social conventions about right and wrong (i.e., expectations about human conduct [norms] as shared by a community). This involves an evaluation of actions on the basis of some broader cultural context, value system, or religious standard (e.g., Clark, Cowan, & Dowell, 1997; Corey, Corey, & Callanan, 1993; Jonsen, Siegler, & Winslade, 1998). On this basis, behavior perceived as ethical within one community or culture may be perceived as unethical in another.Pediatric cochlear implantation is clearly a case in point. Those identifying with the culturally deaf community frequently perceive this process as unethical, whereas those who do not identify themselves in this way are more likely to view pediatric implantation as ethical. The situation is complicated by the fact that there are reasons (unrelated to ethics) to question the implantation of children, just as there are reasons to support it (Vernon & Alles, 1994).Therein lies the dilemma for parents, for deaf people, and for professionals working with deaf children. Use of Technology The appropriate use of technology lies at the crux of this dilemma. Blume (1993) notes that the medical profession tends to equate“best 292 CURRENT ISSUES medical practice”with the use of modern technology; people often want to believe that the use of the latest“cutting edge” technology increases the possibility of amelioration or cure. There is also the implicit assumption that technology will facilitate “normalization” (Stewart-Muirhead, 1998). Whereas ever-improving medical technology certainly has had a positive impact on the lives of many people , including deaf people, varied opinions on the effectiveness of cochlear implants have contributed to the ongoing controversy. In exploring the potential implications of modern technology on the human condition, George Montgomery (1991) refers to the story of Frankenstein to clarify the fear of what could happen when scientific advances outpace ethical considerations.He feels that cochlear implantation has progressed from the research stage directly to the clinical-commercial stage without what he considers to be an adequate period of evaluation. This is the same argument repeatedly put forth by the National Association of the Deaf (Testimony Before the FDA, 1997).In addition, the position statements of organizations such as Self Help for the Hard of Hearing (1994) and the American...