Researchers must carefully consider how to screen participants for suicidality, paper says
Researchers studying conditions that cause chronic pain often screen participants for signs of depression, since chronic pain and depression are often linked. But depression is also linked to suicidal ideation. The question then becomes whether researchers asking about depression should also ask participants if they have been thinking about harming themselves. And if the participant says yes, what is the researcher’s responsibility to act?
These are the thorny ethical and practical questions that a group of researchers, led by faculty at the University of Illinois Chicago, tackled in a recent paper. They argue that, yes, researchers have an obligation to screen for suicidality if they are asking about depression. They lay out a framework of seven key questions researchers should consider in deciding how they approach this responsibility.
While the response might seem simple — if someone says they’re thinking about hurting themselves, you get them help — in reality, it’s much more complex. How do you balance the need to care for a patient with their right to autonomy to make their own decisions? After all, thinking about harming oneself, however distressing and alarming that may be, is not the same as having a plan to do so. If researchers alert doctors every time a participant says they’ve thought about hurting themselves, that could violate the patient’s right to privacy and strain health resources. Another option, having a psychiatrist on call for participants 24/7, is costly and would limit the number of research projects that could be funded.
“How can we get participants the care we think they need without us being so paternalistic that it suffocates them or stymies them? That’s where the ethical issues come into play: What is the right mix?” explains senior author Judith Schlaeger, associate professor in the College of Nursing.
This ethical exploration grew out of an ongoing National Institutes of Health-funded study looking at whether acupuncture or guided relaxation can help alleviate chronic pain from sickle cell disease. In that study, known as the GRACE trial, researchers screen participants remotely about a number of health indicators, including signs of depression and suicidality.
After grappling with the ethical dilemmas of screening for suicidality remotely, the team landed on a protocol for the GRACE study. If a participant responds that they are not thinking about harming themselves, nothing happens. But if the participant answers that yes, they have thought about it with any level of frequency, that triggers a page to pop up in their screener that directs them to the National Suicide Prevention Lifeline and Crisis Text Line.
That component — understanding their responsibility to act and what the trigger is for action — are the first two steps the paper lays out for researchers working to decide how to approach this issue. The other five are: examine responsibilities for action, protect patient autonomy and privacy, identify indirect and collateral participants, mitigate risk of bias, and manage sociotechnical considerations of integrating research data into clinical practice.
The key takeaway for other researchers is to think about these issues and their interconnectedness, said lead author Eric Swirsky, a clinical associate professor in the College of Applied Health Sciences who studies medical ethics.
“Deliberate decision-making requires taking steps,” he said. “They don’t necessarily have to go in that order. They may not all be relevant to every trial. But they should each be considered.”
The paper was recently published in the journal Contemporary Clinical Trials Communications. The other current and former UIC authors on the study are Andrew Boyd, Carol Gu, Larisa Burke, Ardith Doorenbos, Jonathan Leigh, Hongjin Li, Dr. Robert Molokie, Crystal Patil, Alana Steffen and Victoria deMartelly.