Abstract
Little ethical recommendations on returning children’s individual research findings are available for researchers in behavioral sciences, especially when compared to genetic research. Anecdotic evidence suggests that since parents are often interested in their child’s individual research findings, researchers tend to offer this information as a form of compensation for research participation. Despite good intentions, these practices are not without potential harmful consequences for children. We were confronted with these difficulties and with the paucity of available guidance on this topic, being involved in a longitudinal, infant development study, i.e. tracking infants at risk for autism (TIARA). First, we review current ethical recommendations and discuss their limitations in the light of the TIARA study. Second, we will suggest to revise these recommendations, by identifying and applying the relevant bioethical principles and concepts at hand. Third, as an example of practical implementation, the adopted ‘return of research findings’-policy for the TIARA-study is presented. The principles and concepts we engage with are the ancillary care responsibilities of the researcher, non-maleficence and beneficence, the right to an open future of the child, and the avoidance of therapeutic misconception. Ultimately, we present the concrete return of research findings policy implemented in the TIARA-study. Here, we suggest restricting the systematic return of children’s individual research findings to cases where findings are considered clinically significant and actionable for the child. We discuss the broader implications for designing and conducting research in behavioral sciences with children.
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Notes
Although the phrase ‘at-risk for autism’ is widely used in research settings, we understand that the use of the word ‘risk’ when referring to autism is controversial. At-risk language frames autism as a threat, as a medical condition to be prevented as such. More neutral use of language replacing ‘risk’ by ‘likelihood’ or ‘chance’ could function as a less pejorative alternative [20].
To identify earlier ethical recommendations on returning children’s individual research findings, we carried out a literature review. Papers were included for review if they (a) prescribed ethical recommendations on whether and how (b) individual research results of (c) minors (< 18 years) should be (d) returned to parents (e) within the field of psychological and pychiatric sciences. Papers were excluded if they merely (a) empirically researched the effects of returning such findings or stakeholder preferences on the topic, or (b) when they only addressed genetic or biological findings. To this extent we searched Web of Science using the following search terms (ethic* OR recommendation*) AND (result* OR finding*) AND (return OR feedback OR communication OR disclosure) AND (psycholog* OR psychiatr*) AND (child* OR infant OR youth OR adolescen* OR parent*). This search yielded 379 results. Based on title and abstract, 6 results were selected for full-text review. Three papers were excluded for only adressing genetics or neuroimaging findings. One paper did not discuss individual research findings, while one did engage with our precise research question, but addressed the issue in an empirical-descriptive way [4]. Ultimately, one paper could be included, i.e. Lefaivre et al. [2].
Lefaivre et al. refer here to the potential benefits of gaining individual knowledge.
User guidelines of instruments like the ADOS-2 and BSID-III highlight these risks of overinterpreting results of a single test at one point in time as a definite diagnostic assessment, especially during early development. The ADOS-2 for example, does not use clinical cut-offs in the toddler version of the instrument, while BSID-III mobilizes the terminology of developmental index and acknowledges limitations to its stability over time, when compared to intelligence tests administered at school age or later in life. We are however concerned that such strong interpretations might still take place when feeding back findings to parents in a research context, despite efforts of the developers of these instruments to apply the necessary nuances.
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Acknowledgements
We are grateful to all TIARA study team members for contributing to the formulated policy.
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This project has received funding from Flanders Research Council under Grant agreement number FWO-SBO S001517N, from KU Leuven Humanities and Social Sciences interdisciplinary project under Grant agreement number BLOZ/17/019 and from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation program under Grant agreement number 804881.
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Vanaken, GJ., Noens, I., Roeyers, H. et al. Ethics of returning children’s individual research findings: from principles to practice. Eur Child Adolesc Psychiatry 30, 1163–1171 (2021). https://doi.org/10.1007/s00787-020-01606-4
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DOI: https://doi.org/10.1007/s00787-020-01606-4