The Finding You Weren’t Looking For
When reporting unsolicited or incidental findings from research, include participants in the decision-making – and be less conservative
Tieneke B. M. Schaaij-Visser, Gerhard A. Zielhuis |
Imagine you are enrolling participants for research on a hereditary disease. Part of the investigation involves extensive genome sequencing to identify novel causal genes. Then you “accidentally” stumble upon a gene mutation in one of the participants that has no relationship to the disease of interest, but does substantially increase the risk of a different serious disease…
In most European countries, the policy is only to report such unsolicited, or incidental, findings if they are clinically actionable. If, on the other hand, there are no treatment options for the condition, the study participant does not have to be informed. In fact, researchers are urged to be as conservative as possible and take all possible measures to avoid being confronted with such a finding – but, unfortunately, that is easier said than done.
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