DNA-debate - DNA-debate

The technology is evolving fast and DNA tests are becoming increasingly affordable and accessible. Whether it’s about knowing where you came from, or tailoring your medical treatment better to you, the number of possibilities is increasing. There are also more ethical questions: “Do I want to know everything about my DNA?”, “Can my DNA data be sold on?”. You are confronted by these types of choices throughout your life. To be able to formulate a broad answer to the use of genomic information in health care, a research framework has been set up, consisting of a citizens forum, the DNA debate and the final symposium.

Citizens Forum
Prior to the DNA debate, Sciensano organized, together with the King Baudouin Foundation (Koninklijke Boudewijnstichting — KBS) the Citizens Forum, in which 32 citizens set about answering the following questions;
How do citizens want the use of genomic analyses in health care to develop? What applications do they want to see supported? What do citizens think about sharing their genomic data? Who do they want to share it with and for what purposes? Is privacy an issue for them? The aim of the citizens forum is to formulate recommendations for the competent authorities to support their policies. 

Read more about the citizens forum

Read the final report (EN)

DNA debate
The online citizens participation platform “www.dnadebat.be” was launched in February 2018. For a period of one year, large-scale debates could be held (online and offline) about the use of genomic information and regarding he lessons that had been learned from the previous citizens forum.

4 topics were discussed:
•    What makes me want to know more about my DNA, or why would I prefer not to know too much about it?
•    What motivates me to share my DNA data, or what makes me reluctant to do this? Why?
•    A genetic passport for every citizen: a good idea or not? Why?
•    How would DNA be used in your ideal society? Which applications should be avoided? Why?

DNA is what shapes us and what makes us unique. It is a sensitive subject that affects all of us and raises personal, ethical questions. We can only answer how we feel about it as an individual.
Citizens and patients have the right to discuss the decisions that will ultimately also have an effect on their own health care and that of the people around them and their offspring, and in that way play a policy-supporting role.

Final symposium
In 2020, the main recommendations were presented to the experts and politicians.
3 core messages, which the majority of Belgians support, came out of the debate;

1. My DNA, my choice: The participants in the DNA debate, emphasize that they find it important to be able to continue to make decisions about the use of their genomic information. The knowledge about their genes must not, under any circumstances, lead to obligations or pressure on individuals.
2. DNA is not the most important thing of all: Society must prevent/cannot allow DNA to be used as a label to categorize or discriminate against individuals.
3. Respect for privacy, transparency and traceability: Belgians want to maintain an amount of control over their data. They will have more confidence in sharing their DNA data if there is a clear and adaptable legal framework to protect against any misuse, while encouraging scientific progress

More information about the Final Symposium DNA Debate