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Outside the Lab Laboratory management, Omics, Profession

The Finding You Weren’t Looking For

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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About the Authors

Tieneke B. M. Schaaij-Visser

The Patient and Public Advisory Council for Biobank Research, the Netherlands


Gerhard A. Zielhuis

The Patient and Public Advisory Council for Biobank Research, the Netherlands.

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