Citizens forum on the use of genomic information in health care

Citizens forum on the use of genomic information in health care [1]

Project duration:

September 1, 2018

December 1, 2018

In short

The introduction of NGS tests in health care could have a major influence on the organization of health care provision. This technology can have several different applications depending on the situation. Some researchers claim that this technology will lead us to “genomic medicine”, with the associated specific screenings, more precise diagnoses and increasingly personalized treatments. A development that raises important ethical, legal and social questions; questions that concern everyone. A social debate has begun.

Project description

In collaboration with the King Baudouin Foundation, [2] the Cancer Center (at Sciensano [3]) is organizing a citizens forum on the use of genomic information in health care within our society.

The project began with a workshop for and by experts, to define the topics and problems.
Then 32 citizens, selected to provide as diverse a cross-section of society as possible, spent three weekends discussing it with each other, with information provided by a number of experts in the meantime. An information brochure [4] was written for citizens on the use of genomic information in health care using 9 scenarios. The conclusions of the citizens forum were collated in a final rapport [5] and presented to the Minister of Public Health by the citizens themselves.
The citizens forum was followed by a wide social DNA debate [6] embedded in traditional and social media. The conclusions of the citizens forum are being presented to all stakeholders during a workshop in which the citizens are come into contact with them directly.
The project will be concluded during the DNA debate final symposium, in which the main recommendations will be presented to experts and politicians.