The use of genome information in health care : ethical, legal and societal issues – Report of the Issue framing workshop

In recent years, genomics has become an important field in medicine. The technologies used to sequence our DNA have evolved significantly to the point where it is now possible to read and analyse a person’s DNA with great accuracy at a reasonable price.

Many are convinced that the use of genome information in healthcare will save costs and enhance quality of care by improving diagnosis, identifying targeted treatments and opening up opportunities for screening and personalized prevention. Others argue that there are many questions surrounding genomic medicine: not only technical and medical scientific questions, but also ethical, legal and societal issues. These could have a profound impact on health and healthcare. People need to be confident that genomic medicine works for their common benefit, with no exploitation, and with sufficient guarantees for the protection of their privacy. The Belgian Minister of Public Health asked Sciensano and the King Baudouin Foundation to deliberate on these issues with citizens. Sciensano and KBF are collaborating in partnership to organise the Citizens’ forum ‘When do I have my DNA checked?’. The project officially began in Brussels on 23 February 2018 with the issue framing workshop ‘The use of genome information in health care : identifying and discussing the ethical, legal and societal issues (ELSI)’. Over fifty experts, policymakers and stakeholders listened to experiences and examples put forward by experts from Belgium and other countries. In an interactive setting, they set the scene for discussion points, interesting case studies and problems to be addressed during the citizens’ forum. Everyone had the opportunity to pinpoint the most imminent issues relating to genomic medicine in their everyday practice and to specify which questions absolutely should be deliberated on by citizens.

The results from the issue framing workshop, which are reported in this document, then serve as an input for the citizens’ forum.