Working Group on Communicating Informed Consent to Individuals Who Are Deaf or Hard-of-Hearing
I. Introduction
Obtaining informed consent for participation in research has become an increasingly complex issue. Due to issues of language and cultural difference and interpretation, it can be additionally complicated for people who are deaf or hard-of-hearing. *
On May 25, 1999, the National Institute on Deafness and Other Communication Disorders (NIDCD), National Institutes of Health (NIH), convened a day-long working group on "Communicating Informed Consent to Individuals Who Are Deaf or Hard-of-Hearing," in Bethesda, Maryland. The purposes of the meeting were: (1) to clarify issues of informed consent; (2) to develop guidelines for use by scientists who are recruiting deaf or hard of hearing individuals to participate in clinical research; (3) to highlight materials for the scientific community to use in facilitating clear communication between deaf or hard-of-hearing research volunteers and scientific investigators in clinical research; and, to propose new, needed materials for improving communication about informed consent.
Dr. Carolyn Stern and Dr. John Madison served as co-chairs. Dr. Stern participated through an ISDN video transmission from Rochester, New York. Other members of the working group consisted of scientists, linguists, and other experts in the fields of deafness and hearing impairment from governmental and private institutions, and private organizations representing the deaf and hard-of-hearing communities. Other experts presenting and participating in the meeting were from several NIH institutes or centers, the National Human Genome Research Institute (NHGRI), Warren Grant Magnuson Clinical Center, the NIH Office of Protection from Research Risks, as well as observers from the deaf community and other NIDCD staff. The members and their institutional affiliations are shown at the end of the document. Two teams of interpreters served the two meeting sites. After each series of presentations, there was considerable discussion. That discussion is summarized in the final recommended guidelines.
*It is the stated preference of the National Association of the Deaf (NAD), Self Help for Hard of Hearing People, Inc. (SHHH) and other disability community organizations and advocates to use "people who are deaf or hard-of-hearing." Throughout the report differing terms including "hearing impairment" are used by differing organizations and individuals in some cases reflecting historical use on documents or from organization or meeting titles.
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