open access: European Journal of Human Genetics - To tell or not to tell ? A systematic review of ethical reflections on incidental findings arising in genetics contexts

European Journal of Human Genetics - To tell or not to tell ?  A systematic review of ethical reflections on incidental findings arising in genetics contexts

Introduction

Incidental findings (IFs) can arise in all medical contexts, though they have been most frequently reported in neuroimaging, oncology and genetics settings.¹ Examples include a brain aneurysm in a healthy control subject involved in neuroimaging research,¹ a malignant skin tumor discovered during a woman’s routine breast cancer screening,² and learning that someone is of higher risk of Alzheimer’s disease when they present at a genetics clinic wanting to know if there is a genetic cause for their cardiac condition.³ IFs have been defined as findings having potential health or reproductive importance for an individual, discovered in the course of conducting a particular study (in research, clinical care or screening) but beyond the aims of that study.¹

In recent years, much has been published on IFs in general and IFs arising in imaging contexts.^{1, 4, 5, 6} There is yet to be a systematic overview of IFs arising in genetics contexts. This gap in the research is not because IFs do not occur in genetics contexts......