On the occasion of the 70th anniversary of the discovery of the DNA double helix, the Council of Europe Steering Committee for Human Rights in the fields of Biomedicine and Health (CDBIO) has just published a report regarding the public dialogue on genomic medicine.
The report, prepared by Mark Bale (UK, Rapporteur), reflects the main findings, positions and conclusions of a workshop organised on this theme in November 2022, and makes several recommendations, including:
- preparation of a practical guide on successful dialogue at local, national or regional level to support policy makers, funders and professionals who are implementing genomics in research or healthcare.
- Further work on genomic medicine reflects the principles of non-discrimination, especially of certain groups or individuals with an inherited genetic predisposition. Considering that genomic medicine may impact on insurance and employment, there is an opportunity to reinforce the principles of Recommendation of the Committee of Ministers to the member States on the processing of personal health-related data for insurance purposes, including data resulting from genetic tests. This includes the importance of “collective consultation” between all parties to increase confidence and transparency.
The report was prepared by Mark Bale (UK) in the context of the Strategic Action Plan on Human Rights and Technologies in Biomedicine (2020-2025).
- Rapporteur’s report of the workshop on “Public dialogue on genomic medicine”
- Public debate webpage
- Workshop on public dialogue on genomic medicine webpage
* The genome is the entire DNA sequence of an organism. Genes are specific sequences of DNA that encode instructions for the production of proteins, which are the building blocks of cells and perform many functions in the body. Genomics is inherently linked to DNA, as it involves analyzing and interpreting the vast amounts of information contained in an organism's DNA sequence. By analysing the DNA, researchers can gain insights into the functions and interactions of genes, as well as the genetic basis of diseases and other biological processes.