Ethical Issues to Consider in Designing Suicide Prevention Studies: An Expert Consensus Study

Abstract

Aim

Research is imperative to advance our understanding of suicidal behavior and its prevention. Suicide prevention research involves various ethical issues, many of which are not straightforward to address. Hence, suicide prevention researchers sometimes face particular issues when designing their research studies. This expert consensus study aimed to identify the most important ethical issues to consider when designing suicide prevention studies.

Methods

People with lived experience of suicide (N = 32) and suicide prevention researchers (N = 34) rated 80 statements on a 5-point Likert scale from “essential” to “should not be included.”

Results

There was significant agreement between and within the two groups of participants with regard to the most highly rated statements. The most highly rated statements for both groups included the importance of the ethical principles of merit, integrity, justice, and beneficence. Additionally, lived experience participants placed emphasis on the support and care for researchers, and suicide prevention researchers placed emphasis on the risk management protocols and support services for participants.

Conclusion

There was strong agreement between people with lived experience of suicide and suicide prevention researchers regarding what to consider when designing ethically sound suicide prevention research, including the importance of ethical principles and support for both participants and researchers.

HIGHLIGHTS

• There was strong agreement between people with lived experience of suicide and researchers.

• Researchers emphasized adherence to national guidelines.

• People with lived experience of suicide valued care for study participants and researchers.

Keywords:

• Suicide
• ethics
• guideline
• lived experience
• patient participation
• consumer involvement

ACKNOWLEDGEMENTS

We are very grateful to all participants and the organizations that helped with recruitment. This study was funded by the Australian Government Department of Health. K. A. was supported by a National Health and Medical Research Council Early Career Fellowship [1157796] and an Early Career Researcher Grant of The University of Melbourne [ECR1202020]. J. P. is funded by a National Health and Medical Research Council Investigator Grant [GNT1173126]. The funding bodies had no role in the design of the study, the collection, analysis and interpretation of data, the writing of the report, and the decision to submit it for publication.

DISCLOSURE STATEMENT

No potential conflict of interest was reported by the authors.

AUTHOR CONTRIBUTIONS

G. D. contributed to drafting the statements, survey development, recruitment, participant screening, statistical and thematic analysis, and writing the manuscript.

I. O. contributed to lived experience co-design, drafting the statements, and reviewing the manuscript.

K. K. contributed to drafting the statements and reviewing the manuscript.

L. R. contributed to drafting the statements and reviewing the manuscript.

M. S. contributed to drafting the statements and reviewing the manuscript.

J. P. contributed to drafting the statements and reviewing the manuscript.

K. A. contributed to drafting the statements, recruitment, and writing of and reviewing the manuscript.

All authors approved the final version of the manuscript.