III. Background

Amy Donahue, Ph.D., Chief, Hearing, Balance/Vestibular Sciences Branch, NIDCD, provided background from the December 8, 1998, report on genetic testing. The December meeting consisted of experts including molecular biologists, molecular geneticists, ethicists, legal and community activists, clinicians, otolaryngologists, and others to look at the issues from the perspectives of the researcher and physician. Some of the issues of genetic testing for hearing disorders raised include informed consent, appropriate accommodations, understanding of the risks and benefits, individual differences in communication, and future uses of genetic findings. Several recommendations were made by the group: (1) genetic screening for hearing impairment is premature except as part of an appropriately designed clinical trial; (2) many issues must be addressed prior to implementation of genetic testing; and (3) individuals with hearing impairment and individuals who are deaf as well as related organizations representing the spectrum of involved communities of deaf or hearing impaired people should be included in the formulation and establishment of guidelines and future recommendations regarding genetic testing. As follow up, NIDCD and NHGRI are now requesting applications for research on the ethical, legal, social, and cultural issues of studies of genetic variation. (See Report and Application). [Although the deadline is Aug. 31, 1999, the text is helpful in referencing some of the issues of this meeting and the archived link has been provided.]

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