Doing the Right Thing – Ethical Issues in Designing Suicide Prevention Studies
Research is essential to improve our understanding and prevention of suicidal behavior, and to alleviate its impact on society. While no one will question the usefulness of research in this field, designing and conducting suicide-related studies entails ethical issues, many of which are not straightforward to address (Hom et al., 2017; Nugent et al., 2019). Important ethical challenges arise from features that are central to suicide research, such as the involvement of participants who might have an increased risk of suicide and asking suicide-related questions of participants (Fisher et al., 2002; Oquendo et al., 2004; Pearson et al., 2001). As both researchers and institutional review boards or human research ethics committees (referred to here as “research ethics committees”) have a role in designing suicide prevention studies, this editorial discusses tensions that have been noted between these two parties and their views on dealing with ethical issues in suicide research. It advocates for the use of consensus recommendations encompassing evidence-based and lived-experience informed guidance and for thorough collaboration to enhance and sustain the design and conduct of ethical suicide research contributing to effective suicide prevention.
Tensions Between Researchers and Research Ethics Committees
The literature indicates that researchers often receive concerns from their research ethics committees regarding participant safety, specifically regarding the inclusion of people considered at risk of suicide, as there is a perception that this may cause undue distress and potentially conflict with the researcher’s duty of care (Gibson et al., 2013; Lakeman & Fitzgerald, 2009a). However, research has demonstrated that participants can safely take part in suicide studies and that, in fact, asking questions about suicide may have beneficial effects for participants, such as providing a welcome opportunity to talk about their experiences (Andriessen et al., 2018; Bender et al., 2019; Blades et al., 2018). Nonetheless, this does not diminish the duty of care of the researcher, nor the primary responsibility of a research ethics committee to oversee the safety of participants and the ethical conduct of research (Guillemin et al., 2012; Hom et al., 2017). As such, on the one hand, researchers sometimes have viewed research ethics committees as being paternalistic and focused on protecting the institutions at the cost of obstructing research by excluding those who might benefit from the research (Edwards et al., 2004; Guillemin et al., 2012). On the other hand, research ethics committees worry that researchers may attribute too much discretionary power to the committees, while they rather see themselves as facilitators of high-quality research (Barnard et al., 2021; Klitzman, 2011). Thus, the tensions between researchers and research ethics committees appear to relate to diverging views on their responsibilities and roles in the research process, crystallized around ethical issues in designing and conducting suicide research.
Researchers and research ethics committees are typically guided by national research ethics guidelines, such as the US Federal Policy for the Protection of Human Subjects (Department of Health & Human Services, 2018) and the UK Policy Framework for Health and Social Care Research (NHS Health Research Authority, 2020). However, national ethical guidelines, often informed by the Declaration of Helsinki (World Medical Association, 2013), have not been designed for suicide research specifically. Therefore, for example, the Australian National Statement on Ethical Conduct in Human Research stipulates that: “Their application should not be mechanical. It always requires, from each individual, deliberation on the values and principles, exercise of judgment, and an appreciation of context” (National Health and Medical Research Council, 2018, p. 11). Thus, it is important to examine experiences of researchers and research ethics committees to enhance our understanding of their views on how to conduct “good” suicide research.
Views of Researchers and Research Ethics Committees
Given the apparent sensitivities in this field of research, surprisingly few studies have investigated the experiences of researchers and research ethics committees in dealing with ethical issues. Studies that examined the feedback that researchers received from their research ethics committees when submitting suicide-related study applications revealed that most concerns relate to the ethical principles of safeguarding the health, well-being, and integrity of participants, the assessment of risks and benefits of research participation, participant competency and consent, and adequate risk management for a vulnerable population (Andriessen et al., 2019a, 2019b; Lakeman & Fitzgerald, 2009a). Thus, most concerns seem to address issues regarding potential harm to participants and researchers’ responsibility to participants, rather than, for example, concerns regarding researcher competency and the impact of suicide research on researchers.
Researchers must also deal with ethical concerns associated with the use of the Internet and social media in suicide research, for example, research aiming to identify risk factors for suicidal behavior or trial interventions (Bailey et al., 2020; Hokke et al., 2020). Specifically, the use of publicly available data from social media or online forums, as well as trialing online interventions, poses a few specific challenges (Kleiman et al., 2019; Michaels et al., 2015). One could argue that posting information online publicly implies consent for others to use that information. Nonetheless, there is still the question of what expectations the posters had when posting their data, whether such implied consent is applicable, for example, to minors, and what strategies researchers apply to deidentify the data used in their analysis and publications (Bailey et al., 2020; Conway & O’Connor, 2016; Park et al., 2022). Researchers may also face major ethical issues when they detect a study participant with an apparent acute risk of suicide, for example, based on participants’ social media postings, survey replies, or real-time data (Nock et al., 2021; Podlogar et al., 2016). Thus, ethical challenges arise regarding (re-)identification of participants, how researchers decide and manage intervening in an online or technology-based environment, and what passive or active interventions would be appropriate, for example, ranging between providing online resources and outreach to study participants (Cosgrove et al., 2017).
Studies indicate that most researchers modify their ethics application in reply to the concerns they received from research ethics committees, including modifications regarding risk management, recruitment, or data storage (Andriessen et al., 2019a, 2019b; Bailey et al., 2020; Lakeman & Fitzgerald, 2009a). Researchers also consult their research ethics committee and/or provide them with evidence from the literature. Despite this additional work, most researchers tend to view the review process as having a positive impact on the research. Nonetheless, delays caused by the duration of the ethics approval process, and subsequent problems regarding additional costs or staffing, as well as changes to the study design have also been reported (Andriessen et al., 2019a, 2019b; Bailey et al., 2020; Moore et al., 2013).
To our knowledge, only two studies have investigated the views of representatives of research ethics committees in dealing with suicide-related study applications. Lakeman and Fitzgerald (2009b) reported concerns regarding potential harm to participants, the responsibility of researchers toward participants, and participants’ competency and consent. Barnard et al. (2021) reported that research ethics committees appreciate applications that demonstrate research merit and integrity, for example, by adopting appropriate research methods and justifying and managing potential risks. This study further reported that members of research ethics committees do not always possess adequate knowledge about suicide and suicide prevention. As such, members of research ethics committees also rely on personal views and experiences in the assessment and decision-making process (Barnard et al., 2021).
Toward a Dialogue
Overall, it seems that researchers and research ethics committees are mainly concerned about similar ethical challenges, and express a need and willingness to engage in a dialogue and to collaborate with each other (Mondragon Barrios et al., 2017). Such a dialogue may focus on ethical issues regarding study design, recruitment, consent, as well as risks associated with research participation and justification of those risks in suicide research. Given that personal views may play a role in assessing suicide-related applications, a dialogue could also elucidate differences in moral views on how to balance the extent to which researchers should intervene if study participants are perceived as being at risk of suicide and the autonomy of a (potentially) suicidal individual. Also, the legal status of suicidal behavior in a given country could be considered in this context (Mishara & Weisstub, 2005, 2016).
Establishing a dialogue (which may include, for example, researchers joining a research ethics committee, or joint training sessions) may allow researchers to learn how their research ethics committees work and anticipate potential concerns (Guillemin et al., 2012; Wassenaar & Slack, 2016). It can provide opportunities to inform the research ethics committees about evidence from the literature, for example, regarding participant safety and participant experiences of having taken part in suicide studies (Biddle et al., 2013; Blades et al., 2018; Gibson et al., 2013). Establishing a dialogue may also facilitate the work of the research ethics committees and enhance their knowledge of suicide prevention (Barnard et al., 2021). Nonetheless, obtaining ethics approval may take time, and it is recommended that researchers should include sufficient time in the preparation of their study to navigate the ethics process (Andriessen et al., 2019b; Barnard et al., 2021). Rather than seeing the ethics process as an administrative hurdle, researchers can benefit from adequate research ethics training and use the ethics application process as an instrument to ensure a coherent and solid design of their studies.
Lived-Experience Informed Consensus Recommendations
Over the years, the active involvement of people with lived experience of suicide in co-design of suicide research and prevention has gained momentum (Krysinska et al., 2022; Watling et al., 2022). People with lived experience of suicide include those who have experienced suicidal thoughts, survived a suicide attempt, cared for someone through a suicidal crisis, or have been bereaved by suicide (Roses in the Ocean, 2022). The positive impacts of such involvement include enhanced quality and appropriateness of research questions and recruitment strategies, and more adequate interpretation and implementation of study findings (Brett et al., 2014; Gradinger et al., 2015). While the active involvement of people with lived experience of suicide may signify a paradigmatic shift by opening the research field to people with lived experience, it also bears ethical challenges, for example, regarding psychological safety in the research team and power balance between lived-experience researchers and other researchers (Boote et al., 2002; Sangill et al., 2019). However, the boundaries between the two groups are not necessarily that sharp. A recent study that involved people with lived experience of suicide and suicide researchers found that about half of the researchers identified as having a lived experience of suicide (Krysinska et al., 2022).
The literature, as well as our own research in this field, revealed a need for more guidance regarding dealing with ethical issues in suicide studies (Andriessen et al., 2019a; Barnard et al., 2021; Hom et al., 2017). Therefore, our team, involving researchers with lived experience of suicide, surveyed two expert panels (i.e., people with lived experience of suicide and suicide researchers) to develop consensus recommendations for researchers when designing suicide prevention studies (Dempster et al., 2022). Participants rated a series of statements covering a range of topics, such as the use of national ethics guidelines, the involvement of people with lived experience of suicide in co-design of studies, involvement of high-suicide-risk participants, conducting suicide prevention research online and via social media, impact of research on participants and researchers, risks of research to participants and nonparticipants, asking participants suicide-related questions, and relationship between researchers and research ethics committee. Overall, there was strong agreement within and between the two groups of participants, resulting in highly endorsed recommendations, summarized in Table 1. The consensus recommendations expand the recommendations that are available from national guidelines for use in suicide prevention studies and constitute a novel and primary resource when designing suicide prevention studies (Dempster et al., 2022).
Interestingly, there was strong evidence of empathy from one group for the other (Dempster et al., 2022). While people with lived experience focused on care and support for participants and researchers, researchers focused on participant risk management protocols and support services for participants. Furthermore, there was ample consideration for the ethical involvement of people with lived experience of suicide in the research process, and strong support for reflexive empathy and establishing a dialogue and collaboration between researchers and research ethics committees.
Panelists at a recent webinar – involving researchers, members of research ethics committees, and people/researchers with lived experience of suicide – on dealing with ethical issues in suicide prevention studies, welcomed the consensus recommendations as a useful tool in the design of suicide studies as well as to engage in a conversation with research ethics committees (Suicide Prevention Australia, 2022). The consensus recommendations were seen as especially useful for researchers who do not have other guidelines on or have little experience in conducting suicide prevention research. Nonetheless, while such recommendations can be used as a springboard, further work is needed to adopt them internationally and within local contexts.
Toward a Trialogue
Collaboration between researchers and research ethics committees, as well as genuinely involving people with lived experience of suicide in research, has been identified as contributing to ethical design of suicide research. It has also been noted that people who are involved in designing and conducting suicide research may wear different hats (e.g., as a person with lived experience of suicide, a researcher, and/or member of a research ethics committee). Thus, to enhance the ethical design of suicide prevention studies it is essential to transcend the old dichotomies of one group versus the other and consider the design of suicide studies in a trialogue. In addition to providing evidence from the literature to research ethics committees, researchers can include people with lived experience of suicide as a trustworthy source to communicate that involvement of (potentially) suicidal study participants can be beneficial for participants and the outcomes of the research, for example, in terms of establishing the effectiveness of interventions (Blades et al., 2018). Rather than asking whether potentially suicidal people can participate in studies, the ethical question is how to balance the potential risks and benefits of their participation with disadvantages and benefits of excluding those participants, and how to justify the risks (Suicide Prevention Australia, 2022).
Conclusion
Suicide prevention research comprises various research designs and evaluations of prevention programs. While research in this field is imperative for improving suicide prevention across target populations and settings, there are multiple ethical challenges inherent to research with people considered at risk of suicide. Ethical design of suicide prevention studies can benefit from the use of consensus recommendations and a collaborative approach involving researchers, members of research ethics committees, and people with lived experience of suicide. A collaborative approach and reflexive empathy may allow the different parties to learn about each other and to overcome tensions stemming from confusion about each other’s role in the design of suicide prevention studies. Adopting consensus recommendations to local contexts and settings may further enhance and sustain the ethical design and conduct of suicide prevention studies.
Karl Andriessen, PhD, is a senior research fellow at the Centre for Mental Health, Melbourne School of Population and Global Health, The University of Melbourne, Australia. He leads the program of research on ethical issues in suicide research, and is internationally mostly known for his work in the field of suicide bereavement and postvention.
The author is grateful to the researchers, participants, and organisations, who contributed to our studies and the October 2022 panel discussion on ethical issues in designing suicide prevention studies.
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