Ethical concerns in suicide research: thematic analysis of the views of human research ethics committees in Australia
Suicide is a persistent public health problem. Worldwide, approximately 800,000 people (10.6 per 100,000 people) die by suicide annually, and for every suicide, there are more than 20 suicide attempts, which has a huge impact on families, caregivers, and communities at-large [1]. Sadly, over the last decade, the suicide rate in several countries has increased. For example, in Australia the rate increased from 10.9 in 2008 to 12.2 in 2018 [2]. Such increases have fuelled public concerns and calls for more suicide-related research to optimize prevention approaches [3].
While high quality research may inform effective practices and policies in suicide prevention, research in this field faces ethical challenges. These include participant safety and informed consent and whether individuals who are perceived to be at an increased risk of suicide should be asked to participate in intervention studies [4, 5]. On the one hand, there are concerns that including at-risk participants in research may cause them distress and run counter to researchers’ duty of care. On the other hand, there is the view that excluding them will preclude the assessment of effectiveness of interventions for those most in need [4, 6]. Balancing these views requires an in-depth examination of who holds them and why they are held. Of particular relevance are the experiences of researchers who successfully obtain ethical approval for suicide-related studies, and the experiences of research ethics committee members reviewing such studies. Only a few studies have investigated the experiences of these two groups, and most of these have focused on researchers.
Lakeman and Fitzgerald conducted a survey with a sample of 28 researchers, mostly located in the UK and the USA [7]. Few researchers in this study had experienced major problems in obtaining ethics approval, possibly due to their careful anticipation of concerns related to accessing the study population, maintenance of confidentiality, and responsibility of care for participants. However, some researchers reported that they had encountered resistance from their research ethics committee when seeking approval for suicide-related studies. Researchers in other fields have also reported having experienced an over-protective or even paternalistic attitude of research ethics committees concerning sensitive research [8] and have highlighted tensions between researchers and their committees due to a mismatch of expectations and confusion about each other’s roles and responsibilities [9, 10].
Recently, our team conducted two surveys regarding researchers’ experiences in obtaining ethics approval for suicide-related studies in Australia and internationally [11, 12]. In both surveys, respondents reported that research ethics committees were mostly concerned about potential harm to participants and researchers’ duty of care, while there were only occasional concerns regarding researchers’ competency and safety. Most respondents in both surveys modified their ethics application and/or consulted with their research ethics committee to address the concerns raised and reported that the committees’ feedback had either a positive impact or no impact on their planned study. The findings suggested that researchers in this field can anticipate potential concerns and communicate effectively with their research ethics committees.
To the best of our knowledge, to-date only one study has looked at the experiences of members of research ethics committees regarding dealing with suicide-related study applications [16], although there have been studies on how research ethics committees deal with other sensitive topics [10, 13,14,15]. In that study, Lakeman and Fitzgerald [16] surveyed 125 members of international research ethics committees, mostly based in the UK and Canada. Respondents reported potential harm to research participants, responsibility of the researcher to participants, and participants’ competency and consent as the major concerns. Additionally, some respondents perceived their research ethics committees as paternalistic [16].
This study was designed to take a further, more in-depth view of research ethics committee members’ experiences in dealing with suicide-related study applications and aimed to investigate their experiences in assessing and deciding about such study applications. More specifically, the study explored the following research questions: (1) what issues are important for members of research ethics committees when evaluating suicide-related study applications? (2) What are the key ethical challenges? (3) How do members of research ethics committees deal with those challenges?, and (4) What kind of advice can they give to researchers in this field?