Cyber-age tech raises novel ethics for IRBs
Cyber-age tech raises novel ethics for IRBs
Virtual environment can create real stress
Researchers at the Institute for Simulation and Training at the University of Central Florida in Orlando, FL, are studying physical interventions used in a virtual world. Their work opens new horizons for rehabilitation clinical care, but also raises new questions for ethics review boards.
For instance, should IRBs require investigators to inform participants about potential uses for stored brain wave mapping that do not yet exist except perhaps in science fiction novels?
Or, if a virtual environment causes participants to feel anxiety, much as they would in the real environmental setting, should the virtual world study be handled any differently by the IRB?
"Our IRB has been very proactive in dealing with the best course of action when new technologies come out," says Cali Fidopiastis, PhD, associate director for applied cognitions for active lab at the Institute for Simulation and Training.
The IRB anticipate future problems and discusses how to handle new types of data and unique issues related to technological advances, she adds.
The institute's work delves into areas that most people have never imagined.
For example, the institute has created a virtual environment in which people with traumatic brain injuries can learn their daily activities of living.
This is similar to how rehabilitation facilities teach patients how to adjust to their new limitations. Such facilities typically have small kitchens where patients might practice making coffee or baking cookies.
But the virtual environment takes this a step further by recreating a particular person's own kitchen.
Similar study in stuttering
In another study, researchers studied the emotional response of people afflicted with stuttering problems, using wireless skin conductor equipment. They had stutterers sit in a virtual restaurant, ordering from a fictional menu.
"Once they got into the experiment they started to immerse themselves into the task of ordering from the menu, and we had them interacting with real [people as] waiters and hostesses," Fidopiastis says. "When they started that process, we saw changes in skin-conducted responses and their engagement that modeled a real world setting."
The virtual restaurant was designed to give the stutterers an experience with first a compassionate waiter/actor and, secondly, with a less helpful waiter/actor, she adds.
"When the bad waiter came in, you could see a change in skin conductive response," Fidopiastis says. "They still were engaged in the environment, but they were more emotionally-aroused than they were in the presence of comforting waiters."
Investigators told the IRB that the virtual restaurant experience would not be as emotional as a real restaurant experience. Plus, it would be impractical to take people with stuttering problems out to a real restaurant and then switch waiters in that setting, Fidopiastis notes.
"We could do this in an experimental setting and not have a person in a situation where they would be embarrassed," she says. "It's a controlled environment, so the person doesn't feel bad about him or herself."
The IRB's chief concern involved safety with the wireless skin conductors, she notes.
"All of the devices had to be connected to the individual as he walked through the environment, so it was more of a safety issue," Fidopiastis says.
Another major ethical concern with the institute's advanced technology involves the collection of individual brain waves.
While the collection of brain waves seems innocuous, its use might not be entirely safe.
For instance, brain waves might be used to activate a device, such as a cursor, Fidopiastis says.
Also, there's a theory that brain waves could be captured to study higher order thinking.
"So how do you store this type of data and protect it?" Fidopiastis says. "And with the latest technologies coming out, this is a burgeoning field, and many engineering firms want to get into this field."
IRBs need to know why investigators will store the data and for how long it will be stored, she adds.
"We designate it as a special type of data that needs to be handled with care," Fidopiastis says.
For example, brain waves from people who've had brain injuries could be stored in a database that gives researchers the information they need to better understand head injury, she suggests.
"We need to stipulate with the IRB what the researcher is using the data for," Fidopiastis explains. "And the participants need to be aware of this purpose."
If the data is simply being stored for possible future research purposes, then the participants should be told that the information could be used in future research work, she adds.
Key questions to ponder
IRBs also might ask these sorts of questions:
- How are you going to store the brain waves?
- What would happen if a person's brain waves were used to operate a brain wave interface device?
- What stipulations should an IRB put in place to protect participants?
- Is there a risk of invasion of privacy?
- How do you protect the brain waves?
- What do you tell participants about how the waves will be used over time?
"What stops researchers from saying, 'I collected this data in 2006, and now new technology allows me to extract features and use the data in a different way,'" Fidopiastis says.
"Most researchers don't know what they have," she says. "They're trying to get on the research bandwagon, going in the direction funding is going."
And IRBs lack experience in dealing with data made available through new technologies, she adds.
"I don't think IRBs are prepared for the ramifications, especially when people are using biosignatures to identify people," Fidopiastis says.
"Your brain pattern is like a fingerprint," she explains. "Some researchers believe that even showing that data — whether single or combined — is like showing a naked picture of a person, and that's a huge ethical concern that hasn't been worked out."
Researchers at the Institute for Simulation and Training at the University of Central Florida in Orlando, FL, are studying physical interventions used in a virtual world. Their work opens new horizons for rehabilitation clinical care, but also raises new questions for ethics review boards.Subscribe Now for Access
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