Symposium Recap: Consent & Other Ethical Challenges in Conducting Research with Deaf Persons

Jokingly named Nim Chimpsky, he was the world’s most famous monkey, as Columbia researchers four decades ago boldly and publicly attempted to teach the chimp how to sign.

But largely unreported were the complaints made by several deaf researchers who didn’t appreciate the way that Nim’s story was being told.

“These apes were not signing,” said Robert Pollard, PhD, director of the Deaf Wellness Center at URMC.  “They were learning sign vocabulary, but that’s very different from using American Sign Language, which is often what was being reported in the media.”

RobertPollard

Robert Pollard

Communication gaps can damage relationships and create distrust between researchers and the Deaf community.  They can also create ethical dilemmas that endanger the informed consent process.  Speaking at the 2014 CTSI Symposium, Pollard outlined the communication challenges that can occur when researchers are working with the Deaf community.

“Some of you may not immediately think of deaf people as a language and cultural minority group, but it’s important to understand at the outset that ASL is very much different from the English language,” said Pollard.  “That difference between ASL and English is crucial when it comes to informed consent.”

Comprehension challenges

The communication issues that can arise between hearing researchers and the Deaf community sometimes stem from subtle but important differences between ASL and English.

In ASL, as in Spanish, the noun comes before the adjective: “red car” becomes “car red.”  Verbs are often positioned at the end of a sentence, just as they are in German.  “I washed my car last week” is signed typically as “Week past, my car, I washed. ”  Like Hebrew, ASL doesn’t use specific vocabulary for state-of-being verbs, such as “is,” “am,” or “are.” Both Hebrew and ASL accomplish those linguistic functions but not through a specific vocabulary term as English does.  And unlike any spoken language, space around the signer’s body can be assigned linguistic meaning, such that certain concepts, often nouns, “remain in space” and can be incorporated into a conversation simply by pointing to or glancing at that space or forming a verb within that pre-defined space.

Conversations themselves also tend to occur in a different order among deaf people.

“Deaf people will typically prioritize the importance of sharing information quickly, clearly, and in the first portion of a conversation, and will save the small talk until last.  That’s the opposite of what hearing people tend to do,” said Pollard.  “So sometimes hearing people will think a deaf person is being awfully blunt and straightforward, and on the other hand, sometimes the deaf person will think the hearing person is obsequious and hiding information.”

When it comes to reading comprehension, the average U.S. deaf high school graduate only reads at a 4th grade level.  This isn’t due to lack of intelligence, said Pollard, but due to the difficulty of acquiring literacy, which is usually taught phonetically, when deaf children arrive at school without a solid familiarity with spoken English, as hearing children do.  In fact, the best deaf readers are those born to deaf parents who arrive at school with a solid language base in ASL.  They learn to read and write English as a second language and do so more successfully than deaf children born to non-signing hearing parents.

Reading comprehension levels vary widely, of course.  But due to average abilities, it’s unlikely that the informed consent process could employ written forms; reducing highly clinical language to a 4th grade level is often challenging or impossible.

Presentation of consent information orally (without a qualified sign language interpreter present) is also out, as lip-reading is a completely inadequate means of communication for a handful of reasons.  And even if an ASL video or live ASL interpreter is employed — as is often the case in studies involving the Deaf community — a given research participant’s sign language fluency can’t always be assumed.

“You don’t learn it unless you’re exposed to it early enough and long enough,” said Pollard.  “We therefore have this enormous curve of sign fluency in the deaf population.”

The dialogic approach

But in regards to informed consent, Pollard and others have established methods to help bridge some of the communication gaps.  Some aren’t specific to the deaf population, but apply to any “host” community where research is taking place.  For example, researchers should engage the population ahead of time, and they should make concerted efforts to work with deaf researchers who may already be providing services or studying aspects of the population.  Both of these approaches can help with the informed consent process.

More specific to the Deaf community, however, is a developing method called the dialogic approach, which is based on the belief that deaf people can learn more quickly through conversation than through a more static approach.

“If you go to a meeting at a Deaf club, and there’s a lecture on something, it’s never a monologue,” said Pollard.  “It’s this vibrant dialogue.  People from the audience are asking questions.  It’s very different than my experience as a hearing lecturer.”

So rather than a video which shows just one person signing a potentially lengthy explanation of a study, researchers at the National Center for Deaf Health Research have developed informed consent films that show several deaf people having a conversation about the study.

Similar videos have come out of the Deaf Wellness Center, and the conversations always make sure to highlight all of the most important points in the “source” document. These dialogic videos can create higher levels of comprehension that a single interpreter or monologic ASL video could provide, and show that when it comes to the Deaf community, sometimes a nontraditional approach is all that’s required.

“There’s hardly any need to address the Deaf community as a disability group or a medical group,” said Pollard.  “What we’re really talking about is a different language and cultural group.”

***

The 2014 CTSI Symposium, which took place on March 13, was titled “Ethics in Research: Consent Quandaries,” and was hosted by Dr. Carl T. D’Angio, Professor of Pediatrics and Medical Humanities & Bioethics at the School of Medicine and Dentistry.  To view the Symposium in its entirety, click here.

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