Over at On Becoming a Domestic and Laboratory Goddess, Dr. Isis looks at challenges of opening up participation in human subjects research to potential subjects who are not fluent English speakers:
When one enters the university hospital here at MRU, there are a number of skilled and qualified translators that are available to help patients that can’t dialogue in English to communicate with health care staff. They are able to sufficiently translate documents to allow a patient to provide some reasonable level of consent (my M.D. blog buddies can debate the quality of said consent). There is no infrastructure like this in research at most major research universities. Consent forms are written in English. Even if I could provide verbal translation for this man, it would not be ethical for him to sign a document in a language he cannot read himself and understand. Thus, it all more or less becomes a moot point. Beyond that, while I am a fluent Spanish speaker, I am not a qualified medical interpreter. I have no idea how to say “indwelling arterial catheter.” Babelfish says it’s, “catéter arterial dejado en un órgano.” I know that can’t be right, but who am I to question Babelfish?. Even if I were completely confident saying, “We are studying the physiological effect of [Dr. Isis’s favorite stimulus] on vascular function” in Spanish, it’s not the best use of my time as a researcher (unless one of you folks want to write me in for 10% effort, and then I will make sure I learn to say it).
So, the question is, is there an ethical issue here at all … ? The National Institutes of Health mandate the inclusion of minorities in human research studies. In our area, members of the major minority groups often do not speak fluent English. However, the translation of study documents and the hiring of an interpreter to help with the consent is expensive and I have never known an investigator to include a translator in a budget when they could have a technician. Furthermore, if you are willing to translate a consent form into one language, what about all of the other languages that might be spoken in the area around where the study is being conducted, no matter how rare? Indeed, most people I know make the decision that the ability to understand and communicate in English at a 6th grade level is a criteria for participation.
Yet, if the ability to speak English is a criteria for participation, then we by default fail to include particular groups in research cohorts. We’re back to research cohorts being comprised of middle-aged white men.
(Bold emphasis added.)
It looks to me like there is an ethical issue here. Plus, I think I see a scientific issue. Together, the two kinds of issues make me think that tackling the issue of translation should be a priority for researchers (and for the agencies funding their work).
