Raising and Educating a Deaf Child

International experts answer your questions about the choices, controversies, and decisions faced by the parents and educators of deaf and hard-of-hearing children.

Question from V.Z., Italy

I really want to know if the Informed Consent for a Clinical Trial is only read by a deaf person or there is an interpreter during the procedure who is able to help the volunteer to better understand what is written. Is a Video Interpreting (relay) service (VIR) usually employed or a Computer Assisted Realtime Transcription (CART) service? Do you think that a platform with VIR service could help the deaf person’s understanding?

Question from V.Z., Italy. Posted March 1, 2016.
Response from Marc Marschark - NTID

Essentially, the answer to your question is “it depends on the individual.” For most deaf individuals, at least in the United States, reading an appropriately-worded informed consent document is sufficient. It is the responsibility of both the researcher/medical professional and their institutional ethics review panel to ensure that the document is, indeed, “appropriately worded.”

For deaf individuals with lower levels of literacy, of course a sign language interpreter would be helpful (either live or via VIR). The kind of interpreting, in that case, also would need to depend on the individual, because there are deaf adults (as well as children) who do not have fluent sign language skills. Those who are low-language, for example, would need very different kinds of interpreting than those who are skilled in Italian Sign Language. Deaf individuals who are “oral,” also might need support with an informed consent document, either through further explanation or more simplified language.