Abstract
Abstract Because of personalized medicine and the need for massive data sharing, genomics is becoming everybody's business. There is a need to raise public awareness and to make citizens' voices heard on the ethical, legal, and societal issues (ELSI) in genomics. Therefore, Sciensano - the scientific Institute of Public Health in Belgium - organized an online public debate on the use of genomic information in health care, to produce recommendations based on citizens' values for health policymakers, related experts, and stakeholders. To launch this public debate, Sciensano created an interactive website with a discussion platform. We provided more than 75 high-schools with an educational package to help them organize the debate in classrooms, and organized an essay contest. We developed an online teaser test, based on 15 ethical dilemmas in genomics, and a short information video. The DNA debate was covered by national newspapers, television, and radio stations. In total, 1106 users voiced 1247 opinions on the website. Preliminary results from the qualitative analysis of these contributions show great diversity in societal norms and values surrounding genomics. The general interest for the DNA debate indicates that citizens realize that genomics can have a big impact on the organization of health care and that they are willing to contribute to the discussion about how genomic information should be governed in society. This DNA online debate shows that citizens can make meaningful contributions to a complex field like ELSI in genomics. Continued involvement of the public in the governance of genomic information in society is vital. It ensures that societal norms and values guide the technology and not the other way around. Key messages The online DNA debate raised public awareness and made citizens’ voices heard on the ethical, legal, and societal issues in genomics. Continued involvement of the public in the governance of genomic information in society is vital.
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