Questions on Ethics in Our Research

Questions on Ethics in Our Research

Shubhamkar Ayare -
Number of replies: 2

  1. What motivates parents to volunteer their kids for research participation? Does that have implications for the background or general population of kids that participate in our experiments?
  2. There's this question in the PREBO form: If no, how do you plan to recruit participants? (Attach the relevant documentation, such as flyers, letter to schools, etc., if applicable) That makes me wonder how the [child] participant recruitment system at our department actually works? Do we contact their parents personally? Or is it only the parents who visit our websites or see our fliers in public places?
  3. How do the incentives work for child participants or parents? For adult participants, at my previous department, we have usually awarded a small monetary compensation or a coupon for turning up. But I don't exactly see awarding such compensation to parents as being ethical. So, is it without compensation?
  4. In my understanding TCPS2 was meant as a course on Ethics that could be substituted by any other reasonably good course. So, I was surprised to see it listed in PREBO. Is it because it is a good course vs is their any legal binding on CEU to use TCPS2 in particular?
  5. Is there any need to store the mapping between participant's names and identifiers? I imagine giving participant's the ability to delete data is one reason. But that mapping provides a way to identify the individuals from their identifiers, since the mapping goes both ways. If data deletion permission is the only thing, may be we could upgrade to using hashing, which only provide a one-way mapping.

In reply to Shubhamkar Ayare

Re: Questions on Ethics in Our Research

Christophe Heintz -
Most of your questions are for the Kiko lab to answer. I'll try nonetheless to answer to the best of my knowledge.
1. The parents usually are interested in what is going on in the head of their infant, toddler or child. Plus that is an "activity" and giving an activity to a child is valued in our culture.
Does that lead to a sample bias? In my opinion, our recruitment methods always include a sample bias, so the question is mainly whether one anticipate that constitute is a confounding factor or not. For infants, the idea is that they are not enculturated, so cultural background does not matter so much anyway. And there is no reason to think that there would be a relevant genetic feature that has an impact on the results.

2. The Kiko has a wonderful and very efficient system, which went through the legal experts before it could be implemented. The Kiko receive information from birth clinic. They are allowed to contact the parents of newborn babies once and only once, after which they have to destroy the information.
For older child, there is the possibility to contact school: you then have to go through a quite complex procedure and get the green light at many different levels: from child, to parents, to teacher, to headmaster, to county officials, ... Some work is done to make it possible. If you want to know more about how difficult it is, you can ask Nejra who tested in school. Guilherme is also going to test in schools in January.
Last but not least: for older children, we have a "booth" at the science museum. Go and visit it! Azzurra is testing there.
3. At the Kiko, the parents are not compensated, but the children receive a present. (When my children were babies: I confess to bringing them to do experiments to make money; I was a student at that time. I don't think that was immoral, but you might think otherwise).
4. It is a good course ... You did not like it?
5. Depending on the need of the experiment, there can be indeed a mapping. The point is to make this mapping difficult, especially to potential hackers.
In reply to Christophe Heintz

Re: Questions on Ethics in Our Research

Shubhamkar Ayare -
Thank you! I will be sure to interact with the Kiko lab to enquire more!

Regarding 4, the course felt more attuned to avoiding legal issues and ethics only seems to be a side-effect. Which is fine. But the course does not touch animal studies and, I think, not even independent researchers. But I was more interested in knowing whether TCPS2 has a legal binding on CEU researchers.