Ethical Issues in the Genetic Study of Deafness

I AM VERY PLEASED to have the opportunity to address you concerning the ethical issues involved in genetic counseling and deafness. I am especially happy to be able to speak to such a distinguished group because I probably bring a somewhat different perspective to the subject of deafness than the one you are used to. It is probably best if I begin by briefly describing that perspective. For about eighteen years I have taught a course on the psychology of deafness. One of the first things we discuss in the class is the difference between viewing deafness as a pathology that should be cured or prevented and viewing it as a human condition to be understood. I call these two perspectives the medical and cultural points of view. Individuals from the two groups agree on audiological definitions but disagree on the emphasis that should be given to prevention and cure vs. the emphasis that should be given to social and rehabilitative services. I adhere to the social or cultural point of view.

What I mean by this is that I personally and many of the people I know well have accepted the fact that deafness is one aspect of my individuality. I do not spend any time or energy thinking about curing my deafness or restoring my hearing, but I do spend substantial time and energy trying to improve the quality of life for all people who are deaf.

For some reason, people who hear have a very difficult time understanding this concept. If you will permit me to digress for a moment, I will give you an example. I was interviewed by Ms. Meredith Vieira for the television show "60 Minutes." During the interview, she asked me this question: "If there was a pill that you could take and you would wake up with normal hearing, would you take it?" I told her that her question upset me. I told her that it was something I spent virtually no time at all thinking about, and I asked her if she would ask me the same question about a "white" pill if I were a black man. Then I asked if, as a woman, she would take a "man" pill. Our conversation continued long after the videotaping was done, and we have had several subsequent conversations. But she never understood. She still does not. She still thinks only from her own frame of reference and imagines that not hearing would be a terrible thing. Deafness is not simply the opposite of hearing. It is much more than that, and those of us who live and work and play and lead full lives as deaf people try very hard to communicate this fact.

As you can see, this is an emotional issue for me. It is a much more emotional issue for many other deaf people. Is that relevant here? Yes, I believe it is, because the genetic study of deafness and genetic counseling have a great deal of significance for the deaf community generally. As Dr. Christiansen pointed out, many deaf people, particularly those who consider themselves members of the deaf community, do not consider themselves to be defective; rather, they consider themselves to be different—normal but different. In particular, this difference has a cultural or sociological basis and is expressed most saliently in the use of sign language. If deaf people are not defective or dysfunctional, then, at least in their own eyes, it follows that they would be suspicious of attempts to eradicate deafness.

Beginning with the work of Alexander Graham Bell in the late nineteenth century, deaf people have been frequent and prominent targets of the eugenics movement. It is not widely known by the general public that, in addition to his work as an inventor, Bell was also a leading figure in the education of the deaf in the late nineteenth and early twentieth centuries. In order to put this issue into context...