The balancing act: Empowerment and agency versus protection and safety – Reflecting on the requirement for active parental consent in suicide research with young people

By Sadhbh Byrne

The ethical considerations of suicide research with young people are aptly-described ‘thorny’, not least because young people are, by default, considered a vulnerable population. Although the concept of ‘vulnerability’ in this context is socially constructed [1], [2], and therefore difficult to precisely define, it appears that this is due to the confluence of several factors, including their legal status as minors, limitations associated with their stage of cognitive development, and the power imbalance between participant and researcher [3]. ‘Vulnerability’ has also been attributed to those who live with mental illness [4], with young people experiencing mental health difficulties therefore deemed doubly-vulnerable [1]. Suicide research (ostensibly due to the subject matter itself) is often associated with heightened anxieties on the part of an ethics committee [5]–[7]. In addition, young people are also considered a high-risk group for the onset of mental illness [8], and suicide is a leading cause of death among young people [9]. These points cumulatively suggest that any study on suicide or suicide-related behaviour with young participants must be sensitively and thoughtfully designed, and must prioritise ethical principles in the study design process – specifically, the protection of these (potentially) multiply-vulnerable participants.

Bearing all this in mind, it may seem incongruent to suggest a critical discussion of one of the principal components of the protection of child research participants: the requirement of active consent from a parent or legal guardian. However, I believe that such a discussion is a warranted exercise, if for no other reason than to ensure that we are best meeting our responsibilities to the young people with whom we work.

Young people’s rights

According to the Australian National Statement on Ethical Conduct in Human Research, in research involving minors, specific consent must be obtained from the child and at least one parent or legal guardian. Exceptions may be made in certain circumstances [10], representing an attempt to strike a balance “between protecting young people’s best interests and recognising their right to exert their competence” [11, p. 254]. However, it may be questioned whether these exceptions appropriately and comprehensively account for current understandings of young people’s capabilities and, moreover, their entitlements. Article 12 of the United Nations Convention on the Rights of the Child [12] states that all children have the right to participate in decisions that affect them, thus affording political and quasi-legal legitimacy to the promotion of research that engages young people directly and upholds their agency [13]–[15]. Furthermore, the imperative nature of public and patient involvement (PPI) in research has been widely acknowledged by funding bodies [16]. Empowerment and user involvement are also important tenets of contemporary mental health care [17], [18], including child and adolescent services.

Adult-centred default

However, despite being affirmed in these ways, young people’s right to participation may not be meaningfully manifested in the methodologies employed in individual studies. For example, critical voices have raised issues with the concept of young participants’ ‘informed consent’, suggesting that ‘informed assent’ is a more appropriate term, indicating that the young person’s agreement is sufficient, departing from adult-centred concepts of ‘maturity’ and ‘competence’ [19], [20]. Indeed, many of the ‘default’ approaches to research with young people are veined with paternalism. Take, for instance, the commonplace protocol whereby parents’ consent is requested first, and only in the case where a parent consents is the child asked for consent. This effectively excludes the young person from having the opportunity to participate in the decision [21]. It has been argued that the result of such practices is the creation of “an inconsistent ethical framework that excludes young people from partaking in research, due to the adult-centric perceptions that curtail agency rather than provide the safest means to empower” [19, p. 12].

Does parental consent always = best practice?

It is also unclear that obtaining parental consent effectively ensures the protection of young participants.

Parental consent may be contraindicated for various valid reasons, especially if current suicidality is an eligibility criterion for a young person’s participation. We know that young people express many concerns about confidentiality relating to mental health and suicide [22], and that suicide-related behaviour such as self-harm is often highly-secretive [23]. In some cases, obtaining consent from parents could therefore place young people in a dilemma whereby they must disclose their challenges for the first time [24]. Some may propose that parents are unlikely to be unaware of their child’s mental health issues, but, in fact, it has been stated that “low agreement [between child and adult symptom reports]… is the rule, rather than the exception” [25, p. 198], and that “discrepancies between youth and adult information on mental health symptoms are one of the most robust findings in child and adolescent psychiatry” [26, p. 386]. Young people may fear negative consequences associated with this disclosure of suicidal thoughts or behaviours [27]. Difficulties in the parent-child relationship are known to predict the onset of suicide-related behaviour [28].

Safety of suicide research with young people

Another matter of uncertainty is whether there is a need to employ additional measures to protect young research participants when the subject matter of the study is suicide. A recent systematic review found that that asking research participants about suicide or suicide-related behaviour does not increase risk, and may in fact be associated with small benefits [29]. Participants in self-harm research typically indicate that they would be willing to take part in research on the same topic in the future, that they believe the research was conducted for a good cause, that they liked contributing to science, and that they felt good about taking part as a result [30].

Impact on research quality

Moreover, it has been demonstrated that the requirement of active parental consent has a significant impact on research quality, specifically, lower responses rates, substantial variations in demographic characteristics, and lower self-reported substance use [31]. The sampling bias results in reduced likelihood that boys, older adolescents, and Black and Hispanic adolescents are included [31]; instead, findings are based upon a highly-selective sample, unrepresentative of the population. In addition, the very characteristics that have been associated with lower response rates when active parental consent is required, are also often associated with greater suicide risk [32]. Therefore, the results of studies may not in fact generalise to those for whom they are most needed [33]. Another point worthy of note here is that parental over-control and restriction of autonomy is associated with children’s increased depressive symptoms [34]–[36]. It is an extrapolation to suggest that over-control and autonomy restriction could extend to denial of consent to their child’s participation in research, but this association could potentially compound the known sampling bias against young people at risk of mental health issues.

Conclusion

In sum, it appears that there is reason to query the necessity of active parental consent for all young people participating in suicide research. However, it is important to note that we do not have sufficient information on the consequences of waiving parental consent. While King and Kramer [37] provide a discussion of the (USA-specific) legal considerations when employing such waivers in research with suicidal youth, it is critical that this is further explored, so that we can be sure that our responsibilities to our participants are upheld to the greatest capacity possible.

 

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Sadhbh Byrne (@sadhbhbyrne) is a Research Assistant with the youth suicide prevention research team at Orygen, the National Centre of Excellence in Youth Mental Health/Centre for Youth Mental Health, The University of Melbourne, Australia (sadhbh.byrne@orygen.org.au).

 

 

*Featuring photo by Grace Madeline on Unsplash.