Your DNA, Your Say: global public attitudes towards genomic data sharing
28th April 2021
Conference description from event’s website:
Personal Genomes 28-30 April 2021 Conference.
Owing to the ongoing situation with covid-19, this event was organised as a virtual conference.
Over the past few years advances in sequencing technology, efforts to mainstream genomics in healthcare systems, increased sharing of genomic information, and direct-to-consumer genetic testing have brought us to the cusp of the long-promised ‘genomics revolution’.
However, these advances have brought several challenges including the interpretation of results from genetic tests, which are in part amplified by the lack of standards and knowledge on outcomes from such results. In parallel access to direct-to-consumer personal genetic testing has whetted the public’s appetite for genotyping and ancestry testing, which can result in increased enquires with clinicians in public healthcare systems. Sharing personal genomic data could result in access by third parties for unintended purposes. Finally the vast majority of genomes in public databases continue to be of European ancestries, potentially exacerbating existing health disparities.
The second Personal Genomes conference aims to address these issues. It will bring together geneticists, bioinformaticians, and clinicians from academic and the commercial sector interested in learning the extent to which current genetic testing technologies can help people learn about their personal health and heritage. The meeting aims to democratise access to human genome technologies; facilitate and advocate best practice and governance of personal genomics data access; and promote openness and ethical sharing of personal genome data, while protecting privacy of the individuals.
Watch Anna’s full presentation here: