ELSI Network Meeting - November 2023

On Thursday 2 November 2023, the ELSI Genomics Network held their 4th 2023 event, online via Zoom. The event was titled ‘More than the $um of my parts: Ownership of genomic samples and information’. Bodies and their constituent parts have historically been constructed as waste - 'food for worms' - or 'gifts' - the often-final act of an altruistic citizen to a grateful community. Both constructions have legal implications. A/Prof Wendy Bonython and Dr Megan Best discussed ethical, legal and social aspects of current law, practice and patient expectations regarding ownership of and access to, genetic samples and data. A/Prof Bonython considered legal questions in ownership, and called for a more nuanced and collaborative approach to how we recognise interests in tissue and data. Dr Megan Best reported some of the findings from the PiGeOn project, regarding the views of advanced cancer patients who have undergone molecular profiling as part of a research study. Both talks were then discussed with attendees, with Q&A moderated by ELSI Network coordinator Professor Ainsley Newson.
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