A retracted study that said early-career surgeons were unprofessional for posting personal social-media photos of themselves in bikinis or swimsuits shows that medical research ethics boards are ill-equipped for evaluating studies of internet content.
The Journal of Vascular Surgery retracted the paper July 24, saying the reviewers failed to identify bias in the study’s design and didn’t get permission to use a database of young vascular surgeons. The researchers identified “posing in bikinis/swimwear” on social media as “unprofessional” behavior. The study was widely panned by other scientists as subjective and sexist. The senior author apologized July 27, acknowledging that flaws in the study design “could lead to the ugliness of gender bias.”
The backlash, which prompted the Twitter hashtag #MedBikini, put a spotlight on the ethics board that approved the study. Bioethicists say the incident highlights how the gatekeepers of medical research don’t know how to evaluate studies that rely on social media. The need for more guidelines is growing as the pandemic is forcing more researchers out of the lab and online to keep studies alive.
“This is just proof that when it comes to social media research, in general, we don’t have good guidance,” Emily Largent, a University of Pennsylvania bioethicist, said.
The authors of the Journal of Vascular Surgery study didn’t contend with how the people who posted to Twitter, Facebook, or Instagram expected their information would be used, Elisa A. Hurley, executive director of Public Responsibility in Medicine & Research, said.
Technically, the authors didn’t violate human research regulations because publicly available information like social media posts aren’t covered.
But “there’s this unresolved issue of how the norms for research intersect with the norms of these social media spaces,” Hurley said. “The expectation is your friends are seeing it or you’re sharing with a certain group.”
The backlash should force the institutional review boards that evaluate study proposals to scrutinize their own standards for internet research ethics. If necessary, the review boards should craft whole new rules, said Elizabeth A. Buchanan, a University of Wisconsin-Stout bioethicist who has worked on internet research ethics reviews for two decades.
“Many boards have their own guidelines and review practices. And if they don’t, it couldn’t be a better time than now,” Buchanan said.
Boston University, whose institutional review board (IRB) approved the study according to the retracted paper, didn’t respond to multiple requests for comment.
Digital Expertise Needed
Even though regulators haven’t finalized formal standards on internet research, ethics boards still must understand different platforms, flows of data, and issues of public and private spaces, Buchanan said. The Health and Human Services Secretary’s Advisory Committee on Human Research Protections made internet research recommendations in 2013, but they never progressed to formal guidance.
“Just as we’d look at the qualifications of a researcher to engage in a biomedical experiment, we need to ensure researchers are skilled in internet/social media research,” Buchanan said.
Institutional review boards should protect the rights and welfare of the unwitting participants in studies that use social media, Stephen Rosenfeld, president at Freeport Research Systems, said.
“The research regulations are not helpful in guiding us to the appropriate protections in these cases,” he said.
‘Justice’ Poorly Defined
“Justice” is one of three ethical principles underpinning human research regulations, but it’s the least fleshed out compared with “respect for persons” and “beneficence.”
More than the failure to address the bias and systemic injustice aspects of the retracted study, Kelly McBride Folkers, a bioethicist at New York University, questioned why it was done at all.
Review boards typically don’t evaluate whether a study is valuable, which is one of the main criticisms of the study, Nancy E. Kass, a bioethicist and vice provost at Johns Hopkins University, said. Instead, they look at whether the risks to participants are appropriate and if there’s a fair process for selecting study volunteers.
Whether a study is worthwhile is more a question for the research funder or the medical journals doing peer review. “What’s challenging is we don’t have other bodies besides IRBs who become gatekeepers for whether research can go forward if it is essentially self-funded,” she said.
The HHS human research advisory committee discussed the justice principle during its July 23 meeting. But Rosenfeld, the committee’s chairman, wrote in an email the vascular surgeon study “is less revealing about Justice in research than it is about the outdated and sexist norms in the medical community.”
“That is where the indignation has (appropriately) been focused,” he said. “The IRB approval exposes other issues around research, social media and how we should think about things like privacy, rights and welfare, and minimal risk in the current environment. We’re overdue for such a discussion.”