Since details of government-sponsored human radiation experiments came to light in the mid-1990s, bioethics has become a nationwide priority for reporters and policymakers.
Numerous stories and reports have been written on research integrity, but when it comes to clinical trials, two University professors say not nearly enough attention has been placed on the role of nurses.
Deb DeBruin and Joan Liaschenko of the University’s Center for Bioethics will spend two years and a $500,000 grant from the National Institute of Nursing Research trying to identify the ethical obstacles nurses encounter during clinical trials.
Currently, the overwhelming majority of research ethics writing, they said, focuses exclusively on the principle investigator – researchers who conceive experiments and interpret results, but who typically do very little of the day-to-day work after funding is secured.
“Policies that govern research tend to be informed by that literature,” DeBruin said. “The concern is that if the people who are primarily doing the day-to-day work of research are nurses rather than doctors, we may not really be designing the policies appropriately.”
There’s “stunningly little” information available on the topic of nurses and ethics in clinical trial, DeBruin said. She and Liaschenko hope to change that by conducting a series of focus group discussions with nurses in the Twin Cities and San Francisco.
“They’ll be fairly open-ended conversations about the kinds of moral concerns they encounter in their practices and the ways that they approach them,” DeBruin said.
Those concerns may include patient coercion into clinical trials and funding-based bias.
“We know anecdotally from nurses who are working in clinical trials that there are some horror stories,” Liaschenko said, citing students who have quit clinical trial jobs over ethical objections.
Their hope is to pinpoint these concerns, as well as institutional factors that can contribute to them.
They’re also hoping the study will be a chance to consider proactive policy adjustments, rather than waiting for another ethics disaster to shape policy.
“We can make sure that the protections are really appropriate instead of, ‘here’s the solution to the abuse that happened yesterday.’ “
“Being able to sit down and have conversations with people who conduct this kind of research will allow the design of the system to ultimately be more comprehensive and systematic and less crisis-driven.”
“Since we’ve been working on the application for this grant we’ve been talking to lots of nurse’s groups,” DeBruin said. “People are overwhelmingly pleased that someone is wanting to listen.”
After the researchers hire an assistant, they will begin advertising for focus group participants and schedule meetings.
Dan Haugen welcomes comments at [email protected].