Rapid advances in personalized medicine and genomic technologies increase the number and diversity of situations where citizens have to make complex and personal choices about the use of their genomic information. Additionally, successful deployment of the genome for preventive and medical purposes requires the development of large representative datasets including health and environmental information of the individuals over a life-course period. In short, the genomic revolution is everybody’s business.
Therefore, Sciensano and the King Baudouin Foundation (KBF) organized a Belgian citizen forum in 2018- 2019 on the ethical, legal and societal implications (ELSI) surrounding the use of genomic information in healthcare. The goal is to allow 32 citizens to look at the place of the genome in society and formulate recommendations for the Minister of Public Health and all stakeholders of this field.
The statement “My DNA is my property because it is the most intimate part of an individual” is an important takeaway from the citizen forum. Based on this statement, citizens require autonomy in decision-making related to the use of their genomic information and consider that it is society’s responsibility to provide citizens with the rights of individual control, transparency, and traceability in the uses of this information. Citizens must use these rights responsibly to protect their privacy.
The citizen panel strongly believes that “Individuals are more than their genome and should not be prisoners of it”. To this end, protection against any form of discrimination, categorization, and rejection of individuals based on their genetic makeup must be established. The citizens assert that there are many societal responsibilities to protect citizens from downsides and promote upsides from the use of genomic information: the precautionary principle should guide the way in the development of a framework for genomics. Within a well-developed framework that inspires trust around the use of genomic data, solidarity and reciprocity are core values that citizens support in the context of genomic data sharing.
Citizens identify a range of individual responsibilities in decision making in genomics and accept that societal nudges might be required to balance personal interests and the common good. This citizen forum shows that citizens can make meaningful contributions to a complex field like ELSI in genomics. Continued citizen 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.
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