Abstract

As techniques of molecular genetics are being applied to research on hereditary hearing impairment, ethical dilemmas and conflicts are foreseeable. The authors of this article are an otolaryngologist involved in research attempting to locate genes that cause hereditary hearing impairment and a deaf attorney who has concerns about how new knowledge derived from such research will be used. Issues discussed within this article include skepticism on the part of deaf individuals regarding motives of scientific investigators, informed consent for participation in linkage analysis studies, potential jeopardy for diminution in the numerical size and political clout of the deaf community as genetic causes of deafness are discovered and prevented, and cultural attitudes on human variation versus disability.

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