How to inform at-risk relatives?: Attitudes of 1379 Dutch patients, relatives, and members of the general population
- van den Heuvel, Lieke Marleen
- Stemkens, Daphne
- van Zelst-Stams, Wendy A. G.
- Willeboordse, Floor
- Christiaans, Imke
DOIAbstract
The uptake of predictive DNA testing in families with a hereditary disease is <50%. Current practice often relies on the proband to inform relatives about the possibility of predictive DNA testing, but not all relatives are informed adequately. To enable informed decision-making concerning predictive DNA testing, the approach used to inform at-risk relatives needs to be optimized. This study investigated the preferences of patients, relatives, and the general population from the Netherlands on how to inform relatives at risk of autosomal dominant diseases. Online surveys were sent to people with autosomal dominant neuro-, onco-, or cardiogenetic diseases and their relatives via patient organizations (n = 379), and to members of the general ...
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