Paediatric research and the communication of not-so incidental findings (part 5)

Paediatric research and the communication of not-so incidental findings

Researchers should respect the wish of the child and/or parents regarding the return of research results. However, when the health of the child may directly benefit from the communication of results, researchers may, with REB approval, override a refusal to receive results”. Since such best practices are meant to be complementary to TCPS2, perhaps the…

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Paediatric research and the communication of not-so incidental findings (part 3)

Paediatric research and the communication of not-so incidental findings

Nevertheless, both types of findings remain the source of much debate on the international level. To use but one biobanking example, “[i]mposing the return of results that is applicable in disease research or in clinical trials into the broader resource mission of population biobanks will undermine their longitudinal goals (to say nothing of the creation…

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Paediatric research and the communication of not-so incidental findings (part 2)

International norms have long distinguished between different contexts concerning the ‘duty’ to return IFs and IRRs. For clinical biomedical research in general, the Council for International Organizations of Medical Sciences (CIOMS), in its 2002 International Ethical Guidelines for Biomedical Research Involving Human Subjects, provided that “individual subjects will be informed of any finding that relates…

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Paediatric research and the communication of not-so incidental findings (part 1)

Paediatric research and the communication of not-so incidental findings

The recent introduction of next generation sequencing (NGS) into genetic research is spawning much discussion on the return of results, because there well may be incidental findings (IFs). In the past, international and national ethical guidance was largely confined to clinical trials where there could be some certainty of individual research results (IRRs) and perhaps,…

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