The ethics of child participation in significantly risky non-therapeutic research

Children in Conakry, Guinea, on 14 January 2015. (Photo: UNMEER/Martine Perret)

Children in Conakry, Guinea, on 14 January 2015.
(Photo: UNMEER/Martine Perret)

After recently returning to Melbourne, Australia from Geneva, Swtizerland, where I was the 2015 Monash-WHO Bioethics Fellow at the World Health Organization headquarters in the Global Health Ethics Unit, I have revisited a paper I wrote in November last year on the ethics of child participation in significantly risky non-therapeutic research.

At the time of writing this paper, a safe and effective Ebola vaccine was unavailable and there were many questions related to how to produce one while maintaining existing ethical standards for research involving vulnerable populations. I used this as an example of why I think there are many situations in which it is ethical to allow children to participate in significantly risky non-therapeutic research.

Here are the conclusions I ultimately arrived at:

The principles which can justify significantly risky nontherapeutic research on children are a combination of: (1) direct or indirect benefits to the child participants now and/or in the future (and these benefits need not necessarily be medical, they can also be socioeconomic or otherwise non-medical); (2) a high standard of informed consent that fundamentally focuses on the child participant’s understanding (and capacity for understanding) of relevant features of informed consent. Researchers, parents and guardians, as well as child participants themselves, have different roles and obligations towards one another. This is not an issue of seeking to find excuses to expose children to risk, but rather an issue of seeking the least risky and most ethical way to do so if and when required by public health emergencies or to achieve directly beneficial scientific breakthroughs.

As I do not have any strong inclinations for having this published elsewhere, I have made it available for others via the philpapers archive.

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