title: Linguistic and Cultural Challenges in Communication and Translation in US-Sponsored HIV Prevention Research in Emerging Economies.
abstract: Linguistic and cultural differences can impede comprehension among potential research participants during the informed consent process, but how researchers and IRBs respond to these challenges in practice is unclear. We conducted in-depth interviews with 15 researchers, research ethics committee (REC) chairs and members from 8 different countries with emerging economies, involved in HIV-related research sponsored by HIV Prevention Trials Network (HPTN), regarding the ethical and regulatory challenges they face in this regard. In the interviews, problems with translating study materials often arose as major concerns. Four sets of challenges were identified concerning linguistic and cultural translations of informed consent documents and other study materials, related to the: (1) context, (2) process, (3) content and (4) translation of these documents. Host country contextual issues included low literacy rates, education (e.g., documents may need to be written below 5th grade reading level), and experiences with research, and different views of written documentation. Certain terms and concepts may not exist in other languages, or have additional connotations that back translations do not always reveal. Challenges arise because of not only the content of word-for-word, literal translation, but the linguistic form of the language, such as tone (e.g., appropriate forms of politeness vs. legalese, seen as harsh), syntax, manner of questions posed, and the concept of the consent); and the contexts of use affect meaning. Problems also emerged in bilateral communications--US IRBs may misunderstand local practices, or communicate insufficiently the reasons for their decisions to foreign RECs. In sum, these data highlight several challenges that have received little, if any, attention in past literature on translation of informed consent and study materials, and have crucial implications for improving practice, education, research and policy, suggesting several strategies, including needs for broader open-source multilingual lexicons, and more awareness of the complexities involved.
authors.affiliation: Columbia University, New York, NY, United States of America.
authors.forename: Donna
authors.initials: D
authors.lastname: Hanrahan
authors.affiliation: Columbia University, New York, NY, United States of America.
authors.forename: Patrina
authors.initials: P
authors.lastname: Sexton
authors.affiliation: Columbia University, New York, NY, United States of America.
authors.forename: Katrina
authors.initials: K
authors.lastname: Hui
authors.affiliation: Columbia University, New York, NY, United States of America.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Teitcher
authors.affiliation: Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, United States of America.
authors.forename: Jeremy
authors.initials: J
authors.lastname: Sugarman
authors.affiliation: Center for Ethics and Policy, Carnegie Mellon University, Pittsburgh, PA, United States of America.
authors.forename: Alex John
authors.initials: AJ
authors.lastname: London
authors.affiliation: Harvard Law School, Cambridge, MA, and Partner, Ropes & Gray, LLC, Boston, MA, United States of America.
authors.forename: Mark
authors.initials: M
authors.lastname: Barnes
authors.affiliation: Applied Linguistics and TESOL Program, Teachers College, Columbia University, New York, NY, United States of America.
authors.forename: James
authors.initials: J
authors.lastname: Purpura
authors.affiliation: Masters of Bioethics Program, Columbia University, New York, NY, United States of America.
authors.forename: Robert
authors.initials: R
authors.lastname: Klitzman
mesh_terms: D003142:Communication; D032962:Consent Forms / Q000941:ethics; D003466:Cultural Characteristics; D003906:Developing Countries; D028744:Ethics Committees, Research; D032984:Ethics, Research; D005260:Female; D015658:HIV Infections / Q000517:prevention & control*; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D008037:Linguistics / Q000941:ethics; D008297:Male; D014177:Translations