Ethics for the Pediatrician: The Evolving Ethics of Cochlear Implants in Children

Abstract

The story of the ethical controversy over cochlear implants is unique in some ways and paradigmatic in others. It is unique in the ways that it was shaped by the history of deafness, and of cultural responses to deafness, in the United States. The story is paradigmatic in two ways. First, cochlear implantation was an innovative therapy that was introduced into practice without adequate study. Promising early trials led to FDA approval, although long-term outcome data from rigorous studies were lacking. In this respect, the story of cochlear implants is similar to the history of other innovations that were introduced without rigorous evaluation, innovations such as supplemental oxygen, extracorporeal membrane oxygenation, or corticosteroids for bronchopulmonary dysplasia. Cochlear implants also are paradigmatic of a particular type of ethical dilemma in which advocacy groups claim to know better what is best for children than do the children's parents or doctors. This controversy happened during the Baby Doe debate in the 1980s, when advocacy groups claimed that doctors and parents were conspiring to discriminate against children with disabilities. Ultimately, the US Supreme Court invalidated that interpretation of disability rights. Instead, parents and doctors working together are given discretion to make decisions about what is best for children. With regard to cochlear implants for children, the NAD realizes that they are walking a fine line. As one NAD spokesperson said, "We don't say that hearing parents aren't qualified to make decisions about their deaf children. We say that they need to have contact with deaf people if they're going to make educated decisions". The same could be said for pediatricians. There are 4,000 to 8,000 infants born each year in the United States with severe hearing impairment. Their parents will have to make decisions about what is best. Pediatricians need to understand the options and be prepared to help parents sort through the complex data and multiple options in order to arrive at the decision that is best for themselves and their child. Understanding the ethical controversy over cochlear implants will help.