Whose Genome is it anyway?
"If you accept that genomic data is really important for standard healthcare,
what are the priorities for the next 5 years?"
Professor John Mattick, CEO Genomics England
10th October 2018
Progress Educational Trust event: "Whose Genome is it anyway?"
The Progress Educational Trust (PET) ran a public event at the Royal Society of Edinburgh in partnership with Genomics England as part of their Genomics Conversation. The event explored questions around ownership of genomic data, clinical use of data and consent.
Specific questions raised in the discussion included:
How do we get more participatory involvement in genomics by the public?
What does informed consent actually mean?
Can GPs cope with genomic data at this time?
Admissions to hospital for toxic drug reactions, caused by individual differences in how our bodies process them.
A full report from the event can be found in the BioNews archive here.
The event was chaired by Professor John Mattick (CEO, Genomics England), with speakers and panel members as follows:
Professor Zosia Miedzybrodzka, who works at the interface between clinical practice and research as a Professor of Medical Genetics at the University of Aberdeen, and leads the Scottish participation in the 100,000 Genomes Project through SGP.
Dr Austin Diamond, who is the Quality Manager for the NHS Lothian Molecular Genetics Service, and leads on implementation of software for identification and classification of genetic variants. He is a member of that delivery team for the SGP study.
Natalie Frankish, the Policy & Engagement Manager for Scotland, representing Scottish patients for Genetic Alliance UK
Phil Booth, who campaigns for confidentiality and consent in health and social care through his work with medConfidential
Dr Sarah Chan, who is a Chancellor’s Fellow at the University of Edinburgh working on ethics of new biomedical technologies. She is also a member of the SGP Ethics Advisory Group and the Genomics England Ethics Advisory Committee.