Issues of consent and competency

by Keely Blanch

I started out meaning to write this post about researching in 'over-researched' fields, but as is often the case another idea popped up as I sat down to write. Consent, specifically issues of consent and competency to give that consent, by young people. At what age is a young person considered capable of giving consent for participation in research or other activities?

This thought was spurred by a story that has been in the media over the last few days regarding a young woman, in a metal cage, on the front of a 'monster truck' that was then driven through a wall of fire. It turns out that this young woman is only 13 years old, which raises questions regarding her ability to consent to what could be described as a calculated risk. 

There are differing understandings of young people's ability to consent in different contexts. The ways we understand children and childhood have changed within a research-based context. Recognising the rights of the child, young people are regarded as competent agents, capable of giving assent, and often consent, to participating in research. 

However the age where the line shifts from requiring parental consent and child assent, to requiring child consent and perhaps parental assent is blurry. For instance, at a recent conference I heard one researcher argue his ethics committee negated children's ability to consent under the age of 16, an age perhaps influenced by legalistic determinations of ability to consent to intercourse. On the other hand, some researchers argue we should consider the competency of young people rather than chronological age as a marker for providing consent. Researchers and ethics committees can vary in how they determine the competency of a young person to give consent. 

As I listened to the radio interview with the Monster Truck owner, I began to compare this situation to other contexts. How does this compare to children who perform in circuses? What if this was a movie set - would Sir Peter Jackson be allowed to use a 13 year old in a potentially dangerous stunt? Can this be compared to young people's rights to consent, or not, regarding medical procedures? I think, like many ethical decisions, it depends. It depends upon factors such as risk, harm, benefits and whether the young person can be deemed competent to understand how these situations will affect them, and how their bodies, thoughts, and words will be used by others.

If the Monster Truck stunt had been a research project, it would have had to go through an ethics committee who would have considered these factors. An ethics committee acts to protect the safety of research participants. The researcher and ethics committee would have considered the risk of harm versus the benefit to the young person. They would have insisted that everyone involved was fully informed and understood the ramifications. They would have wanted to see a plan to minimise risk, and they would have wanted an indication that the young person would gain some benefit from participating. 

Given that, at the time of writing, the only voice in the media regarding this stunt is that of the owner, we cannot really ascertain whether this young person was fully informed regarding risk. We are forced to accept the owner's assertion that she freely consented and wanted to participate at face value, and it seems the parents also consented to the stunts. 

However, I am still left pondering some points:

- from what I heard on the radio, apparently the stunt evolved from discussions over dinner between the owner and the young person's parents, who are old friends. Potentially, this could raise issues of coercion, and the ability to freely give consent.

- it is unclear whether either the young person and her parents have been involved with Monster truck stunts before, whether they were fully informed of potential risks, and whether they fully understood those risks. I return to the concept of the circus performers. One might assume that growing up in an environment and seeing the training required, and the impact of mistakes, may provide an experiential understanding of risks involved with performances. A quick google provided several media reports (here and here) that talk of the training and time required to learn stunts. Being told what to do over a few weeks is different to the intensive training that leads to an automatic reaction when/if something goes wrong. I'm left wondering if this young person received training on what to do if she caught fire, whether she had practice runs on the stunt, whether she practiced getting out of the cage, and whether there was an arranged signal for the driver if she wanted to call off the stunt at any point.

- What benefit did this young person receive from taking part? For instance, her father claims she wants to be a stuntwoman, and successfully completing the stunt may have boosted the young person's self-confidence, but in a commercial venture, could/should she have expected to be paid for her participation?

Of course, instances like this are not research. Such events are not dependent upon approval by an ethics committee. As such, consent, and the ability to give consent, becomes an issue for the law. We only have to look at the varying (socially-constructed) ages of consent (without additional parental consent) and/or competency for choices such as smoking (16), sex (16), driving (16), voting (18), marriage (18), joining the police force (18), and gun licence/ ownership (16) to see that judgments on competency and ability to consent to processes vary widely. 

Which raises some questions - should there be age related markers of competency to consent? Or should we consider other ways of assessing competency, and if so, how? And in research, which is more important - the competency or the chronological age of  participants?

[Do check out our resources page which has links to a couple of sites about researching with children.]

Researching with children: Some lessons learnt the hard way

by Kim Brown

I have compiled some thoughts on researching with children from my point of view as a parent, a teacher, a researcher, and an advocate of social justice. I have taken extracts from my Masters and mixed these with more recent deas reflections.

Positioning children within research relations demands awareness of the asymmetrical power relations between researchers and younger participants. The notion of voice encapsulates children’s capacity to speak and their right to do so (Thomson, 2008). Indeed, Roberts (2006) reflects on social research practice that is well-rehearsed in listening to children but not hearing them. Simply adopting child-centred approaches to research may not provide children sufficient opportunity to be heard.

Children’s voice represents a “hard-won” gain in research, yet might equally present researchers with ethical dilemmas when considering how far to acknowledge children’s agency (Kraftl, 2013). Questioning whether it is possible for an adult researcher to create equality with a child participant, Jenks advises recognising “the grounds of difference” (2006, p. 87). One aspect of difference draws attention to adult responsibility, particularly in research domains not conventionally thought of as child-friendly, sexuality being an obvious example (Kraftl, 2013). Drawing upon critical reflexivity may support a researcher in the precarious act of recognising rather than assuming differences. Additional actions may involve participatory roles for the students in the research design or creative modes of communication. Again, I caution that providing children with choices during the research process does not necessarily equate to balancing power differentials between researcher/subject or adult/child. If I reflect on my own research with child participants during my Masters, I can see that I created additional workload for the the young people involved despite my espoused principles of addressing differential power relations.

I sought to empower children to express themselves in flexible ways, both as individuals and as a group, and elicit data to investigate the research question. I chose visual approaches, in part inspired by scrapbooks (Bragg & Buckingham, 2008), and an anti-CV (Higgins, Nairn, & Sligo, 2009). What strikes me in retrospect (ah, the value of hindsight) was my emphasis on using visual approaches to provide tools that ease communication, and not necessarily generate data as a visual product. I now see this distinction as being particularly important. Why agonise over the process of setting and gathering indepedent research activities from children if my intention was to create an atmosphere for ease, conversation and interaction? Having devised an independent presentation and a group activity, the latter was by far the most efficient approach. I am extremely grateful for the efforts that the young people put into their independent activities, but I suspect I might have been able to save them some time had I started with the group activity.

On the day of the activity, I turned up at school laden with morning tea goodies. My visit, whilst pre-aranged was not in the school diary, nonetheless, a member of the administration team facilitated a space for me to meet the young people and then called them up on the intercom. The young people were also not expecting me, so I offered them the chance to opt in or out. All came along. Using low-tech pen and paper, they set about the task of writing a guide book (their prefered form of communication) on the topic of my research. They enjoyed the morning tea, conversing in-depth whilst they doodled, made lists and wrote ocassional sentences. The conversation was the source of rich data analysis, proving that the visual medium of the guide book served it purpose as a conversation starter. Equally important, I think we all had a pleasant morning.

 I have learned several important lessons from my Masters experience around researching with children and school:

1. We know that schools are busy places and present particular challenges for research activity, for example, around communication, access, recruiting participants, free space, and so on. This being the case, why design research that might be overly-reliant on multiple visits? I am not suggesting superficiality here. When our research is small scale, not directly related to curriculum activity, and lacking status of external funding or accomplished researchers, I have found simplicity to be most effective approach.

1. Be clear about the focus of my research. Am I researching methodology or a particular phenomenon? I may have gotten a little enthusiastic about the research design without really thinking about what I was asking of already busy young people. Lambert, Glacken and McCarron (2013) discuss achieving a balance between creative instruments and comonplace conversation when researching with children, and offer some very helpful key considerations in their paper.    doi: 10.1177/1744987112475249

1. Building a relationship with the children involved in research is critical, and if time is short and I am unable to meet with children, I must rely on ethical practices. Procedural ethics offer some widely recognised standards to scaffold research practices, but I would argue, these need to be substantiated by ethical reflexivity or ethical integrity. Maintaining ethical reflexivity involves ongoing critical self-analysis and scrutiny of the research process that moves beyond a simple form of self-confession. Ethics of reflexivity involve an acceptance that differences between researcher and participant extend beyond our research roles and practices, and include values, experiences and dispositions we bring to and maintain beyond the process.

If you'd like any literature references, let me know. :)

Tracy Skelton @ Children as Social Actors network - collective notes

by Kim Brown, Tracy Rogers, and Lara Sanderson

 

These notes are an assemblage of our recollections of the discussion today - 1st Auust, 2014

·      Ethics committee are mindful of the issues faced by schools, who are being saturated by research requests. The flip side for researchers is finding willing participants amongst schools to partner with for research. Schools outside Dunedin also face numerous research requests from large-scale research projects.

·      Raises the question of how useful research might be for schools. We should be considering what participants might gain from our research. Is research intended to benefit participants or PBRF-driven?

·      In the UK currently, publically funded research must indicate and then report on the impact of the research. This system of accountability is favouring research that has demonstrable outcomes.

·      Children are often keen to get involved in research and many in the group have found children agentic in expressing when they do not wish to reply/continue participating. Offering children a range of verbal and non-verbal cues can support their voicing their withdrawal.

·      Parents/schools are often supportive of children participating in research because of the opportunities/learning participation offers.

·      Participation in research can place enormous time pressures on children, who may already have busy lives.

·      Research activities do not always take into consideration the varying abilities of the children involved (despite them being similar ages), nor are always age-appropriate. Take into consideration children’s varying abilities and build flexibility into the ethics application and research design.

·      Research activities may also place considerable demands on parents, who are required to support their children with research activities, transportation, appointments and so on.

·      Parents/carers and schools as gatekeepers – involving parents in the early planning stages of research design may help eliminate gatekeeping further down the track (although may displace children as being recognised as competent social actors).

·      Ethics application – how much are postgraduate students engaging with the document rather than the process of thinking through the process of building ethical relationships and conduct..

·      Ethical engagement in research is a two-way process and sometimes researchers are subject to questionable behaviour from participants. Requires ongoing consideration and learning.

·      Participant information and consent forms are not always culturally appropriate and reflect procedural ethics rather than ethics in practice. Researchers should argue for alternatives in their ethics application and provide a rationale for different approaches.

·      Perhaps the consent could include more statements with a positive orientation towards participation rather than repetition of the right to withdraw.

·      Researchers should see the ethics application as an open or honest conversation.

·      Tokens of appreciation: there seems to be a trend towards larger tokens being offered around Dunedin. Tokens need to be more age-appropriate and consideration shown that the token does not disadvantage or generate a cost for the family (eg. a movie ticket for children too young to watch a movie without an adult).

·      Ethical dilemmas presented by a duty of care towards participants

·      Suggestion that one place on the ethics committee could be reserved for staff call up to (like jury summons)

Post-grad discussion

To support a shift in thinking from the ethics application being merely procedural, to a situation where the ethics application is an aspect of ethics in practice, should postgraduate students undertake a compulsory paper or course in ethics? Is the supervision process enough to foster deepening understanding of research ethics?