stigma, vulnerable population, risk management, return of findings, mental health, epidemiology, children, school-based study
Currently, suicide is the second leading cause of death worldwide for children and young adults 10 to 24 years old.1 Suicidal ideation and behavior is also contributing to a critical global public health crises among this population, affecting 19.8% to 24.0% and 3.1% to 8.8% of individuals, respectively.2
Preliminary data demonstrated a significant upsurge in student suicide rates in Asia during the COVID-19 pandemic, possibly a consequence of disrupted routines and reduced social interactions amid rigorous and competitive education systems.3 There is a significant need for more suicide prevention research toward predicting risk and monitoring the mental health status of Asian children and adolescents.
An epidemiological study was designed to examine the prevalence of suicidal behavior, ideation, and related risk factors among children and adolescents in primary and secondary schools in a Southeast Asian country. School faculty members obtained assent from students and permission/consent from their parents, indicating that mental health conditions of individual students would not be shared beyond the study team. However, for students identified as high risk for suicide and other mental health disorders, the researchers provided a procedure in which permission would be obtained from the parents to release students’ information to mental health teachers—specific faculty members who were trained and responsible for any mental health-related work within the school, such as mental health courses and activities—to assist these students in receiving support. The researchers also permitted mental health faculty members to inform parents as soon as students completed the screening and communicate to them the results.
For political and cultural reasons, as well as fear of being blamed by families for potentially difficult findings, schools did not want the study team to contact parents directly. However, as legal guardians, parents have a right to be informed if their child is at high risk for suicide and other mental disorders. Sharing results with students only would likely be ineffective (and unethical), since as minors, they may not know how to access mental health services.
A digital assessment system accessible only by faculty involved in mental health support enabled the research team to collect suicide-risk data without compromising the privacy of students and families. However, the research team was concerned that some schools, families, and communities may not be equipped to respond to findings from the study. They were also concerned about the unintended use of data, such as differential treatment of students based on their mental health. Also, since suicide risk was the only condition under examination and with a response plan, further complications may arise for other identified mental disorders, such as depression.
Questions
In mental health studies, is it critical that data be deidentified and remain confidential throughout the process of collection and reporting? Are there any concerns about privacy with the method employed in this case study?
What protective measures could be taken in the context of schools?
In this situation, given that schools did not want investigators contacting the parents, would it be ethically appropriate for schools to obtain informed consent from parents, instead of the research team doing so?
The informed consent process should indicate what is done with the collected data (i.e., results will be shared with a study team, instead of parents). If the data are not intended to be shared with parents, yet parents ask for the findings, should they be allowed to receive data regarding their children, since they are legally and morally responsible for their care? What is an ethically appropriate way for parents to interface (or not) with research results?
Although schools were provided referrals to give to students, some families and communities may not be able to adequately respond to suicide risk and other mental health disorders because of a lack of resources or services. In these cases, does the study team have a responsibility to ensure appropriate care for students at high risk for suicide? How can the study results be utilized to improve support and prevention for suicide risk within schools and communities, if mental health services are lacking?
