ZOOM: Citizens and their genome

Genome analyses are now taking place in daily practice. This creates possibilities in terms of prevention, screening and treatment of diseases. That is true even today, for example for people with a rare disease or patients with cancer. Tomorrow there will be many more.However, these analyses do raise questions. What do I want to know about my genome, which means all the genetic material that I received from my biological parents? What medical and non-medical applications do we want to be supported? Who are we willing to share our genome data with? And for what purposes? Is privacy an issue?In the fall of 2018 the KBF and Sciensano organised an in-depth citizens’ forum on the use of genome data: 32 men and women, across the age spectrum and from diverse backgrounds, not experts in genome science but experts on their own lives, experiences and opinions. These citizens spent three weekends in discussions, both as a group and also with stakeholders, people with personal experience and genome experts.In their citizens’ recommendations they encourage policymakers, people working in this area and all stakeholders to set a timeline for change, looking towards a future in which genome medicine is widely supported by society.