The most award winning
healthcare information source.
TRUSTED FOR FOUR DECADES.
Who moved my computer? Online research challenges
Technology changes ethical considerations
There are invariably new and unexpected problems when research involves the Internet. And just when investigators and IRBs find a way to resolve some of these issues, new ones appear as the technology rapidly evolves.
From obtaining informed consent to ensuring data privacy, there are problematic concerns when the Internet is the research vehicle.
"There are different ways of thinking about the issues from different disciplinary models," says Elizabeth Buchanan, PhD, director of center for information policy research at the school of information studies, University of Wisconsin in Milwaukee, WI.
Buchanan offers this view into some new and complex problems that might occur in conducting Internet research:
Data ownership: When researchers conduct studies online, using observational or survey data posted on a particular website, a question can be raised about who owns that information.
For example, a researcher who intends to study social or political interactions on Facebook might find that the Facebook company owns any data collected, and there is the possibility that anything the researcher has posted or collected could exist indefinitely.
"We need to make sure researchers understand that if you get consent to study people on Facebook, the boundaries are much different," Buchanan says. "What are you really allowed access to?"
When researchers step into an Internet world where boundaries are very fluid and unclear, there are multiple questions about parameters, she adds.
"When you have access to a person's Facebook data, you have to be clear about what you're studying, quoting, and how you represent the data," Buchanan says. "That's one of the challenges with online research in general."
Identifying subjects: Researchers should be sensitive to the possibility of inadvertently identifying subjects of online research. This can happen more easily than they might imagine.
For instance, suppose a researcher quotes a few, seemingly unidentifiable lines in a subject's Facebook page. Someone else might be able to trace these lines back to the correct person, thereby identifying him or her. It might be possible to put exact quotes in an Internet search engine and come up with the correct person.
"There's a good chance a person can be found out," Buchanan says.
Here's another example of what can happen: "A few years back, Google bought all of these previously private news groups and medical support groups," Buchanan says. "These used to be private and not searchable, and you had to register to enter them."
But this all changed with the buy-out.
One researcher working these groups discovered just how public the private information had become when she did a Google search and one of her own private research questions popped up in the search results, Buchanan adds.
"She had posted this question in a news group that she thought was private," she explains. "So with technology we have to make these judgment calls, and when someone says, 'I'm going to look at a private news group,' they can't tell participants that the information will remain private because they don't know who will buy it and have access to it."
The track-back ability is a real possibility, Buchanan says.
"There are some real and serious moral questions that researchers and IRBs need to ask themselves when they engage in different types of research," she adds.
Think about privacy on a continuum: Researchers need to think of online data as being along a continuum from the extreme of very private and sensitive data including medical information that no one wants available in any public forum to the other extreme of data that is not damaging even if it is released and identified, Buchanan says.
For instance, a post to a recipe group likely would cause no harm.
"I encourage researchers and IRBs to think about the type of data and this continuum of what's private, sensitive, and not sensitive," she says. "There's a lot of room for compromise, but you have to make sure the risks don't outweigh the benefits of research."
Also, investigators need to consider the unanticipated and uncontrollable repercussions of their Internet research.