Informed consent is a legal and ethical requirement of most research in human beings, but obtaining proof of consent in illiterate populations is difficult. Oscar Benitez from the Guarani Indians Project, Paris, France, and colleagues used Audiovisual Documentation of Oral Consent (ADOC: video and audiotape recording and photography) in the Guarani Indians Project, a genetic study in the Paraguayan Guarani Indians.
There are around 32,000 Guarani-speaking Indians in Paraguay, most of whom are illiterate, and who communicate with speech based on an ancient oral tradition. Using ADOC procedures after translation from Spanish to Guarani, the investigators obtained consent from 42 of about 100 potential participants. The procedure allowed more than half the potential participants to exercise their freedom of refusal.
Oscar Benitez comments: “ADOC, or similar standardized procedures designed with the same principles, enables valid consent to be obtained from illiterate populations for participation in clinical research, and should be available as an alternative to written and signed consent where needed.”
Contact: Dr Oscar Benitez, Guarani Indians Project, 45 rue d’Alésia, Paris 75014, France; T) +33 (0)1 43 27 70 31 or +33 (0)6 60 86 70 31; F) +33 (0)1 34 12 98 24; E) benitezoscartheo@aol.com
Journal
The Lancet