When researchers interview a child during a minimal risk study at a school, what if they suspect the child is a victim of abuse or neglect? Investigators are ethically obligated to respond to this.
“Researchers should have a plan in place for disclosure to the appropriate authorities, should it be necessary. That should be in the assent form as well as parental permission form, if the study uses them,” according to Ryan Spellecy, PhD, professor of bioethics, medical humanities, psychiatry, and behavioral health at Medical College of Wisconsin.
If an investigator is a mandatory reporter, which varies from state to state, Spellecy says, “there is no question. They report. If one is unsure whether or not they are mandatory reporters, it’s best to contact your institutional leadership, perhaps risk management or general counsel.”
In some cases, researchers are not mandatory reporters, and the research does not concern maltreatment (e.g., a survey focused on that topic). “Investigators are torn between reporting, because it seems like the right thing to do even if they are not mandatory reporters, and not violating the confidentiality of the research subject,” Spellecy observes.
During a recent study, researchers became aware of potential child abuse. Investigators were conflicted about the need to protect the child, and not wanting to violate the confidentiality of the child by sharing the information with the appropriate authorities. Since abuse was not a subject of the study, the possibility of reporting was not mentioned anywhere in the parental permission form. Researchers asked ethicists for guidance.
“We ultimately recommended that they report it. Even though there was no legal obligation, ethically it was the right thing to do to protect the child,” says Spellecy, adding the researchers followed the ethicist’s recommendation, and reported the suspected abuse to the school where the study took place.
If the goals of the study are directly related to past or present abuse or neglect, study participants will be aware researchers will be sharing this information and have consented to do so.
“As part of the consent process, researchers have an ethical responsibility to tell potential participants about the research team’s obligations to report abuse or neglect,” says Lisa M. Lee, PhD, MA, MS, associate vice president for research and innovation at Virginia Tech.
This gives the person a chance to decline to participate if he or she does not want reporting to occur. “The research team must clearly state this to all potential participants,” Lee stresses.
Even if the research is not directly about abuse or neglect, investigators still might discover foul play through conversation, record reviews, or even direct observation.
“Legal reporting requirements apply in this scenario as well, which can present distress for researchers and subjects alike,” Lee notes.
Some people might view a private conversation with a researcher as a safe opportunity to request help. Lee says that it is important for investigators to prepare for this possibility by alerting the whole team as well as potential participants that if found, abuse and neglect must be reported. For example, if a researcher is conducting a play therapy intervention to evaluate its effect on verbal development of young children, it is reasonable to expect a child could express through play someone is hurting him or her. It should be clear to parents who enroll their children that if such a situation arises, the allegations would need to be reported to authorities.
Likewise, if a researcher is examining the relationship between dementia and self-care in a memory care unit, it is possible a suspicious injury would require reporting. “Researchers have an ethical obligation to ensure that participants — and legally authorized representatives — are aware of the researcher’s duty to report,” Lee says.
In situations where reporting is not legally required, it is ethically required if the research participant is a child or a decisionally impaired adult. In these cases, the researcher might be the only person to know about the problem. The vulnerable participant might have no other way to disclose his or her need for protection. “It gets more complicated when the participant is a decisionally capable adult, as they are able to make autonomous decisions about their situation,” Lee explains.
Even so, researchers still are ethically obligated to provide assistance in the form of referrals to domestic abuse services or other applicable resources in the community. “Research teams who interact directly with participants should be aware of their responsibilities and the resources available to them to share with participants,” Lee says.
Jessica Macha, director of the Spectrum Health IRB, says researchers should watch closely for abuse and neglect in certain settings and populations. These settings include trauma centers, EDs, elder care facilities, hospice units, addiction treatment centers, homeless shelters, and mental health facilities. Populations include homeless patients, youth in foster care, patients battling drug or alcohol addictions, and young LGBTQ+ patients.
IRBs are equipped to guide investigators through the considerations of enrolling participants in these settings or situations. These boards must determine whether the risks to participants are sufficiently minimized, whether informed consent is appropriate and obtained in a way that does not place the subject or others at risk, and whether privacy and confidentiality protections are adequately maintained (or participants are appropriately notified when these privacy protections cannot be upheld due to reporting requirements). “Children, dependents, and elders can experience these threats in any population,” Macha notes.
Investigators should be aware they can encounter this situation even when it is not expected. Macha says when considering reporting requirements of abuse or neglect among research participants, investigators must balance the legal obligations and the foundational ethical principles of research that require respect of privacy and confidentiality. “A guiding principle may be that in the decision to inform participants, family members, or others of identified abuse or neglect, the act of reporting should attempt to minimize harm and attempt to not introduce new harms to the participant,” Macha says.
Cooperstown, NY-based Bassett Research Institute is a site for the LongROAD Study, a longitudinal investigation of aging drivers and the factors associated with the ability to continue driving safely. “Although looking for signs of elder abuse or neglect are outside the concern of the study, they could potentially be revealed during our assessments,” says David Strogatz, PhD, director of the Bassett Research Institute Center for Rural Community Health.
Participation in this study includes multiple in-person assessments of factors that may be related to driving ability. Those include physical and cognitive function, visual and hearing ability, medical conditions, and medication use. Research assistants conducting the assessments may observe and ask about physical signs of injury, or may learn of a patient’s concerns, during an open-ended segment at the end of the assessment. “We feel an ethical obligation to follow up with the appropriate authorities if we find signs of elder abuse,” Strogatz says.
For that reason, the consent form Bassett Research Institute uses states researchers are obligated to disclose information about elder abuse or neglect if revealed during in-person assessments. “We make it clear to the patient what is considered confidential and what is not,” Strogatz says. “There will be no need for hesitation if we need to intervene for someone’s well-being.”
If researchers interview a child during a minimal risk study at a school, and they suspect the child is a victim of abuse or neglect, investigators are ethically obligated to respond to this.
You have reached your article limit for the month. Subscribe now to access this article plus other member-only content. TESTING
- Award-winning Medical Content
- Latest Advances & Development in Medicine
- Unbiased Content