A small change with great implications
Here is a blog I recently posted on LinkedIn pertaining to ethics that I thought might be of interest to researchers working with children:
A small change with great implications: How a slight change in the wording of parental consent forms can promote the rights of the child.
As a developmental researcher, I am interested in understanding the factors that best support healthy child development. And as a child rights advocate, I am always thoughtful in using methods and processes that support the rights of the child.
While in this field of study we have the proper expertise and tools at our disposal to conduct developmental research that aligns with the principles outlined by the United Nations Convention on the Rights of the Child (UNCRC), researchers like me are too often challenged by institutional Ethics Boards that do not follow adequate guidelines for research involving children.
In a recent knowledge synthesis report by the Children and Youth in Challenging Context Network (CYCC, 2014), the authors provide ample evidence of where our current ethical guidelines are limited when it comes to research involving children. But what’s most compelling about this report is the ways in which the authors are able to demonstrate how the absence of proper ethical guidelines continues to impact negatively on the wellbeing of children, impeding progress not only in the implementation of children’s rights, but also in building a knowledge base that will benefit children and youth.
This issue can be attacked from a number of fronts.
The most obvious one is educating policy makers about the ways in which ethical standards can and should be reconciled with the child rights agenda. This is essentially what the international Ethical Research Involving Children (ERIC) group is currently doing. ERIC is an initiative spearheaded by experts in ethics and child rights and it is supported by organizations like UNICEF and Childwatch International Research Network. Here in Canada, the Child Rights Academic Network (CRAN) is also engaging in dialogue with the policy departments of our national funding agencies in the hope to support in the development of more adequate ethical guidelines for child and youth researchers.
I have no doubt that the persistence, commitment, and professionalism of these leader initiatives will eventually lead to some important changes. But I also know that the bureaucratic machine is complex, and that institutional change takes place in slow motion.
This is such an important issue to me that watching change in slow motion makes me restless. Is it really not possible to do something now?
It is this impatience of mine that led me to look for something, anything, that I could do, however small, to help pushing our pursuit of child rights friendly ethical policies a little forward.
But what can a researcher like me do?
I don’t think very much, if I was the only one doing anything, that is. Except, there are many researchers like me out there, just waiting for the opportunity to help, and if we all did what I am about to propose (wait…it’s coming) then a movement will be born and change is bound to happen.
My proposal is one requiring a change in semantics. I am proposing a slight change in the language in which parental consent is obtained, without violating any of the current ethical practices. In fact, there is no reason why this change should not be accepted by any institutional ethics board because it does not imply any change whatsoever in ethical practices.
What is the change? Here is a typical statement in parental consent forms for children of all ages:
“As parent or legal guardian, I authorize (child’s name) to become a participant in the research study described in this form.”
Of course many variations of this wording exist, but the bottom line is that parents are asked to consent for their child to participate in research.
Try and use this instead:
“As parent or legal guardian, I give permission to the research team to approach my child (name of the child) and ask if he/she wishes to participate in your project.”
In this version of parental consent parents are asked permission to talk to the child and ask him/her if he/she wishes to participate in the study.
What will this small change achieve?
First, parents remain the first point of contact for researchers, honouring parental roles and respecting their authority. If parents don’t give their permission, children will not be approached. This is in line with current ethical practices.
Second, asking parents for permission to talk to their children about participation in research sends a message that children are competent (they can say ‘yes’ or ‘no’) and that the researchers respect them. Parents are given an example of respectful consideration for children and their agency, something that is not always explicit in developmental research.
Third, when parents read the ‘permission to talk’ question, they will know beyond doubt that their children will be asked if they want to participate or not, a detail that more often than not researchers neglect to explain clearly in the context of a consent form.
Furthermore, researchers commit to explain how they will obtain assent from children leading to greater research transparency and accountability, which is of utmost importance especially when working with very young children.
In sum, a small change in language can have a great impact in how we think about children, in showing respect for their agency, in allowing them to take charge of decisions in matters that concern them. In other words, a small change in language can go a long way in promoting children’s rights.
If my institutional Ethics Board approved this change, there is no reason why yours will not do the same. I encourage you to revise your consent forms to reflect the principles outlined in this commentary.
You can help advocating for the rights of children in your research practice without violating current ethical standards. Even a small change in how consent forms are written can make a big difference in promoting change in the way researchers think about children.