When last we checked in on the use of people in research, the institutional review boards whose job is to protect human volunteers had approved: a study at Johns Hopkins University that ended in the death of a 24-year-old from an experimental drug, a gene-therapy trial at the University of Pennsylvania in which an 18-year-old died, a University of Wisconsin study that didn't tell parents their kids were at risk for cystic fibrosis -- well, the list goes on.
Despite failing to protect volunteers in medical experiments, IRBs (appointed by institutions doing human research and guided by federal regulations) are cracking down on social sciences, where the risk to volunteers amounts to hardly more than bruised feelings. They challenged a psychologist who wanted to explore people's fear of death ("How can you ask such an upsetting question?" a panelist demanded). They warned a history department not to start an oral history of a state legislature without IRB approval. And they insisted that a psychologist trying to help families whose child had died inform them about "mandatory reporting" should it emerge that they were abusing their surviving kids.
Does it really make sense to imply to grieving parents, who have been invited to participate in a study that could help them, that they are viewed as possible child molesters?
IRBs arose 50 years ago to protect people who volunteer for studies. Technically, only federally funded work must get approval from an IRB (composed of both scientific experts and laypeople). But in practice, institutions insist all human research be vetted by a board, which can demand changes in a study or reject it altogether. In the worst cases, says psychologist Gerald Koocher of Harvard Medical School in Boston, "people are finding it difficult to do important research in the social sciences."
In subjecting social science to the same rules as biomedical experiments, "you constrain research that is socially challenging," says historian Linda Shopes of the Pennsylvania Historical and Museum Commission. In one case, she recalls, "An IRB official told his board that its job is to protect a community from embarrassment. If I'm studying a town's history of racism, am I supposed to protect people from the consequences of their racism?"
In these cases, "IRBs aren't protecting human subjects from actual danger; they're protecting them from the mere possibility of hurt feelings," says social psychologist Carol Tavris.
That's what happened when one university turned a young woman's complaint about privacy into an inquisition -- and an excuse to stifle academic freedom.
Psychologist Elizabeth Loftus made her name probing the fallibility of memory. She made her enemies challenging the veracity of "recovered memories" of abuse. A few years ago, she began investigating one such claim.
The case is a morass of charges and countercharges. Suffice it to say it involves "Jane Doe," who was videotaped at age six accusing her mother of sexual abuse, supposedly forgot all about it, and then was taped at age 17 "recalling" the abuse. A proponent of recovered memory had been showing the tapes around the country, and prosecutors were using them to argue that recovered memories of childhood abuse are real.
Prof. Loftus, at the University of Washington, and a colleague at the University of Michigan uncovered evidence in public records that raised doubts that any abuse occurred, and questioned whether the initial charge of abuse and the subsequent "recovered memory" were induced through manipulative questions.
In 1999, The University of Michigan's board said this work didn't need its OK because it wasn't "human-subjects research." UW's board agreed, saying Prof. Loftus could contact Jane as long as it was for "personal interest," not scientific publication.
But that September, UW received an e-mail from Jane Doe complaining that Prof. Loftus's probe was violating her privacy. Yet Ms. Doe had apparently never before protested the use of her tapes and her real name, or the publication of her story, by proponents of recovered memory.
The head of UW's Office of Scholarly Integrity seized the Jane Doe files and began investigating Prof. Loftus for "possible violations of human-subjects research." It took UW more than 21 months (not the requisite three) to appoint a panel, hold hearings and, last year, clear Prof. Loftus.
The dean nevertheless told her she was never again to contact Mrs. Doe. Such contact would constitute "human-subjects research requiring Human Subjects Committee approval," he wrote in a letter.
When I asked the UW attorney for comment, she declined, saying "regulations require us to maintain the confidentiality of everyone involved." As for Prof. Loftus, the University of California, Irvine, recently offered her a distinguished professorship, which she accepted.
If only the regulation debate also had a happy ending. Social scientists are pushing for a Senate bill that would apply different IRB guidelines to their research from those used in medical studies. Surely we can protect people in medical trials without strangling legitimate social-science research.
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