Ruth Horn, Jenny Merchant and colleagues in the UK-FR Gene Consortium have published an article reporting on the findings of an international workshop organised by the UK-France Genomics and Ethics Network (UK-FR GENE) in 2021.
The findings focus on how collection, storage and sharing of genomic data may pose challenges to established principles and values such as trust, confidentiality, and privacy in countries that have implemented, or are about to implement, large-scale national genomic initiatives.
The article finds that these challenges impact the relationships between patients/citizens and medicine/science, and on each party’s rights and duties towards each other.
The article demonstrates that biomedical data requires careful management, and transparent and accountable governance structures that are clearly communicated to patients/participants and citizens.
It identifies that when third parties partake as stakeholders, transparency takes centre stage and patient benefits must clearly outweigh commercial interests.
Finally, it concludes that any cross-border data transfer needs to be carefully managed to address incoherencies between regional, national, and supranational regulations and recommendations.
Horn, R., Merchant, J. & The UK-FR GENE Consortium. Managing expectations, rights, and duties in large-scale genomics initiatives: a European comparison. Eur J Hum Genet (2022). https://doi.org/10.1038/s41431-022-01247-y