Dealing with uncertainty in prenatal genomics: an international comparison study (360G-Wellcome-211288_Z_18_Z)

Technological advances in the field of prenatal testing mean that we can now diagnose more genetic conditions in the fetus than ever before. Whilst these new tests have created exciting opportunities for comprehensive prenatal diagnosis to inform pregnancy management, the ever increasing amount of genetic information that can be obtained raises ethical and counselling challenges associated with uncertain and unknown results. Whilst some prospective parents desire as much information as possible, potential uncertainty may raise anxiety and complicate decision-making. The aim of this research is to conduct a pilot study in preparation for a subsequent international comparative study. The objectives of this pilot study are to 1. convene a workshop of experts to identify the most pressing questions relating to uncertainty in prenatal genomics and how best each might be tackled; 2. develop and pilot the research tools selected to address those questions e.g. case studies, measure of uncertainty, discreet choice experiment; in-depth interviews; 3. Building on the findings from the pilot, formulate a comprehensive research plan and develop a team for a subsequent large-scale international study.