IRBs Can Expect Increase in Gun Violence Studies
Gag order at CDC is lifted
By Melinda Young
In 2018, a spending bill allowed for research by the CDC into the causes of gun violence, paving the way for new studies to explore the issue. IRBs will need to anticipate these protocols and better understand risks and ethical issues involved in gun research.
A confluence of factors is contributing to an increase in research addressing the problem of preventing gun violence, says Patrick M. Carter, MD, assistant professor of emergency medicine at the University of Michigan Medical School. Carter also is assistant professor of health behavior and health education, School of Public Health, and assistant director for the University of Michigan Injury Prevention Center.
The rise in gun violence research partly is due to more media and public attention on this issue because of mass shootings, Carter says.
“There is a greater number of requests for applications for federal grants and a small increase in federal funding availability,” he adds. “There also has been some increased interest in the private sphere to help conduct research on this topic.”
The CDC gag rule, called the Dickey Amendment, had prevented the CDC from studying gun violence since 1997. The amendment stated that CDC-sponsored research could not be used to advocate for gun control, but it had a broader chilling effect on all federally funded gun research — something Jay Dickey, the Arkansas Republican who introduced the amendment, later said he regretted. In 2018, President Donald Trump signed an omnibus spending bill clarifying that the Dickey Amendment does not ban research into the causes of gun violence. (More information on the amendment can be found at: https://n.pr/2JjSEUP.)
The Dickey Amendment was a serious suppression of gun violence research, says David C. Clark, PhD, director of the human research protections program at the Medical College of Wisconsin in Milwaukee.
“We hope it has been lifted, although we never know,” Clark says, referring to researchers’ skepticism that the CDC begin to fund gun violence studies. (More information is available at: https://n.pr/2JjSEUP.)
A PubMed.gov search for “gun violence” shows a 25% increase in U.S. studies on this topic between 2017 and 2018.
The authors of one recent study investigated how seeing gun violence and hearing gunshots affects children. Investigators surveyed children, ages 10 to 17 years, and caregivers of children, ages two to nine years. The study found that women and younger children were at risk of experiencing high fear as a result of the violence.1
The Crimes Against Children Research Center at the University of New Hampshire, where the study was conducted, is accustomed to handling studies with sensitive data and vulnerable participants, says Kimberly J. Mitchell, PhD, research associate professor of psychology and senior research scientist at the center.
“Our IRB is wonderful to work with, and they’re great in overseeing research participants and finding a balance,” Mitchell says. “We do national surveys, asking about child treatment and victimization, but this study was on a smaller scale.”
For the gun violence study, investigators wanted to survey children anonymously. Research staff brought tablets to several housing authorities or youth community centers, asking children or their caregivers to complete the survey anonymously in a private room.
“We were clear about what the survey was about,” Mitchell says. “Participants were warned that the questions might be upsetting or sensitive, and they could stop at any time or skip questions.”
After completing the survey, participants received a debriefing paper with mental health resources and locations they might need in the event they were upset or distressed, she adds.
Some studies are designed to test interventions to decrease violence involvement among youths who are recruited from the ED after firearm injuries. The young people report on a screening survey that they possess a firearm and use substances, Carter says.
“We designed an intervention around decreasing their substance use and violence behaviors. They are randomized into two groups: one that gets the intervention, and one that has enhanced usual care,” he explains.
For the enhancement part of the usual care, researchers give each participant, including those in the control group, a gun lock to ensure the weapon can be safely stored, Carter says.
One of the study’s challenges involves how to advise participants on what to do to get rid of their firearms, Carter notes. Some cities hold anonymous gun turn-in programs, but there are no such programs in the study region. “We have talked with local police about it and haven’t found much success,” he says.
This means that if participants choose to safely dispose of their guns to reduce their own violent tendencies, then they might have to place themselves at risk. In many cities, the safest way to dispose of a firearm is to give it to the police. But, in this case, the police would perform a background check on the gun. If it has been used in criminal activity, then the person who turned it in could be questioned or charged.
While the city had an anonymous gun buy-back program, it was available very infrequently, he explains.
“We made participants aware of that risk,” Carter says. “We want to keep participants safe from adverse outcomes, and it also would be nice if there was a clear option to offer to the youth because as we hope to decrease their violent behaviors, their having firearms isn’t safe.”
Another challenge when studying people involved in violent acts is that their acknowledgements of past legal issues must be kept confidential, Carter says.
“One thing we’ve heard IRBs address as a concern or potential concern is enrolling folks who may have been involved in the criminal justice system in the past, and there are concerns about confidentiality with the information they provide to us,” Carter says.
“The way we’ve addressed this concern is by making sure we have a very good informed consent process,” he adds. “This is a population that we think is crucial to having in our studies, and excluding them would be a detriment to studying the interventions we’re doing.”
Investigators discuss potential risks and threats to confidentiality up front. They also obtain a certificate of confidentiality from the National Institutes of Health, and they ensure data are protected and encrypted. All gang information is confidential.
Gun violence in the United States is a huge public health problem, and the amount of research currently performed on the issue does not meet the need, Carter notes.
“There is a need to do more of this research,” he says. “This research can be done in a safe way that respects the issues with informed consent and protects participants while investigators study the interventions and programs needed to decrease gun violence and injuries.”
REFERENCE
- Mitchell KJ, Jones LM, Turner HA, et al. Understanding the impact of seeing gun violence and hearing gunshots in public places: Findings from the Youth Firearm Risk and Safety Study. J Interpers Violence 2019 Jun 10:886260519853393.doi:10.1177/0886260519853393. [Epub ahead of print].
In 2018, a spending bill allowed for research by the CDC into the causes of gun violence, paving the way for new studies to explore the issue. IRBs will need to anticipate these protocols and better understand risks and ethical issues involved in gun research.
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