Children and the consent issue

Two of the optional readings for this week touched on the issue of obtaining the consent of children in research projects.  The Druin article focused on a specific project - the creation of a digital library for children - while the Heath et al. piece was focused on the issue of consent itself, with various researchers being interviewed.

I have to say that I find this issue complicated.  I read the Druin article first, and I was rather surprised to see that parents actually volunteered their children for the research project.  Unless the were details missing in the text, it sounds like these children had little to no say with respect to their participation.  And this was for a project that went on for several years!

When I read the Heath article, however, I realized that this issue is more complicated than it first appeared.  If you give children the power to consent or refuse their participation, are you forcing them to make a decision that they are not prepared to make?  Should children be treated like adults on this issue, or should we assume that children are naturally less capable of understanding the implications of participation?  U.K. law seems to suggest that the agency of children prevails if they appear to "sufficiently" understand the nature of the project.  But how exactly is that determined?

All of this reminds of a story about Canadian actress/writer/director Sarah Polley, and her participation in the Terry Gilliam film The Adventures of Baron Munchausen when she was a child.  Years later, she reflected on the fact that the film's content (which is often violent and/or surreal) more or less traumatized her during the shooting, and that the whole experience was extremely miserable and upsetting.  Unfortunately, however, she did not speak up about this at the time!  When she and Gilliam discussed this issue via email years later, the director explained that Polley was always so quiet and polite, and that she didn't give any noticeable hints about how she was really feeling.

I have a feeling that a lot of kids are like this.  I'm pretty sure I was, at least for part of my childhood.  You want to please the grown-ups, or maybe you want to behave like a grown-up by not complaining.  So you might agree to do something that you find scary.

I'm pretty sure that many people can relate to this sort of thing, so it's probably not an uncommon issue.  Given this, how are we ever sure that kids really mean it when they offer consent?  I don't think that there's an easy answer here.


Stephanie Lauren said...

I also found myself gravitating towards the recommended readings this week, as I generally find the idea of informed consent to be quite fascinating.

I'm of the same mindset though Matt, as I find it hard to believe that informed consent can ever be achieved, especially when children are the research subjects. I find the problem is not that children lack the ability or competency to understand research issues, it's just that I find informed consent overall to be a touchy issue. In fact, I was struck by one of the quotations the Heath article contained from Homan:

"We have now reached the point where researchers are operating the principle of informed consent not to protect their subjects but to protect themselves and to guard against the possibility that subjects will claim their rights through litigation." (p. 404)

I think it's a really interesting viewpoint to have, especially considering how social science research usually approaches research from a qualitative perspective. As Luker shows, you won't really know what your research paper is going to address until after you've conducted your interviews, surveys, or other research methods.

You might try to inform your research participants of the scope of the study and the potential outcomes, but this can be very hard to do when you, yourself aren't really sure where your research will lead you.

I imagine this becomes even more complicated when children are involved. As Heath showed, many children are interested in participating in research, but are denied the right to participate as they are considered to not be able to give informed consent due to their age and comprehension levels. This in itself is problematic; however, it is easy to see how gatekeepers and parents would want to keep children from participating in something they believe they aren't able to properly understand.

I found myself reminded of another article while I was doing the readings for this week. Last year in INF1001, I read an article by Tavani and Bottis called "The Consent Process in Medical Research involving DNA Databanks." This article also discussed how informed consent can never really be given, especially when concerning DNA research. DNA donors can never know the correlations that might be drawn from the DNA they contribute to research due to techniques such as data mining.

While this is a very extreme circumstance regarding informed consent, I think it shows how there are some very obvious flaws with the system. However, research is a very necessary part of our world today, so I don't know if a better model necessarily exists, other than exercising your due diligence as a researcher.

Cathy McRae said...

I agree that gaining "informed consent" from children, or people that may not have the agency or competency to make this consent is a complicated issue. I was drawn to the same point as Stephanie regarding the motivation of researchers in acquiring this consent. There is certainly a personal motivation to cover themselves and their work by following ethical procedures when compiling participants, but the article ultimately concludes that, "Their motivation for doing so was not, as Homan (1991) has suggested is often the case with consent procedures, to provide a protective safeguard for themselves...(p.414)" This conclusion is definitely a relief, if nothing else, but the actual motivations appear just as concerning. The article asserts that researchers wish to extend the same rights to children and youths as they do to adults. I find issue with this level of equality. In certain cases, such as the research studies focused on drug or sexual abuse (p.411), morality and ethics dictate that parents should not necessarily be the 'gatekeepers' of consent, as this could potentially violate the privacy of the youth participant. However, to assume that children or youths should be granted the same level of agency and competency as adults in other circumstances could result in damage to the child - just as the Sarah Polley example above.

Heather said...

After listening to the guest speaker from U of T's Office of Research Ethics, I thought more about Druin’s article, which in my view involved children and teens in a ‘minimal research risk’ on the risk matrix shown in class. The way I see it, making a digital library more ‘kid-friendly’ can only be done effectively when asking children directly. It does get tricky if a parent forces this upon the child. However, I’d like to think a researcher would realize the child is not interested in offering anything up. Druin outlines how the children participants were chosen, which lists, “their interest in technology, their ability to communicate” (p. 25). Hopefully both of these factors allow children to get involved in something they had a genuine interest in, as well as back out if they were not interested.
From the reading, I felt that Druin did a good job in trying to make the children participants feel at ease by making the sessions more informal, and facilitating the ‘partnership’ aspect of the study. It becomes more contentious when the field of study is more personal, or informed consent isn’t overtly established and just assumed, as Hines (p. 413) points out.
- Heather

Amy. said...

Our guest speaker this past week expressed a comment toward informed consent that really stuck with me: consent is not a signature on a page, it’s not a legal YES or NO, but rather an understanding and an agreement to participate based knowledge about the study. Such led me to think about a friend of mine, whom last year completed her undergraduate thesis research with children subjects. She had chosen to study children in a vulnerable community, and many parents signed off on their children’s consent forms without questioning the nature of the study, let alone showing much interest. Although the researcher, in this instance, did her best to inform her participants of the nature of the study, I sense an example of the tension that researchers feel when seeking consent from children via gatekeepers, as discussed by Heath et al. (2007, p. 411). Although a child may feel uncomfortable or confused, the researcher has secured legal consent to conduct the study. Sure, this protects the researcher herself – but does it doesn’t soothe her conscience if problems arise. To me this is a serious moral dilemma, and an inherent flaw in the concept of informed consent. I agree it’s hard to determine if children really mean to offer consent – but furthermore, are we as researchers expected to take liberty and exclude participants from a study if necessary, despite having obtained legal consent? I think so – and in a serious situation I feel that I would do so. But, as mentioned by Heath (2007, p. 414), many researchers feel the pressure to obtain data regardless of the means to secure it. I’d like to think that all researchers have the best interests of their subjects in mind…

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