Abstract
Genomic medicine requires to collect and use a huge amount of patient and citizen data. Therefore, the Belgian Minister of Public Health decided to organize a citizen forum on the ethical, legal and societal issues (ELSI) surrounding the use of genomic information in healthcare. This initiative follows the trend of public involvement in Europe regarding ELSI in genomics.
During three weekends, a panel of 32 citizens, informed by experts of different backgrounds, produced political recommendations. We will focus on their conception of solidarity, which is crucial to take into account when considering policies on data sharing in genomics.
Citizens of the panel consider their genome simultaneously as the individual’s property and as something to be shared for the common good. As a consequence, the panel agrees to support solidarity provided individual interests, such as privacy protection, are respected. By solidarity, the panel means supporting genomic data sharing for the common good, which they define as scientific research that improves knowledge (on both prevention and diagnostics) to build a fair society where everyone has an equal opportunity to live healthy.
According to the panel, the government should actively encourage citizens to share their genomic data, but no one can be forced to do it. For instance, the government could motivate citizens to share their genomic data by partially reimbursing genomic tests undertaken without medical prescription. However, because everyone has an equal right to live healthy, the panel esteems that genomic tests for medical needs should be accessible for all, thanks to a well-thought-out and sustainable refund system.
Key messages
Citizens support solidarity in genomic medicine, but demand proportional individual protection. As citizens become increasingly important stakeholders in genomic medicine, all public authorities should actively engage citizens in relevant healthcare policies.
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