BSGM Webinar: Sharing Genomic Data: Access, Ethics and Safety
This webinar will explore current practice and challenges surrounding access and sharing of large-scale genomic data.
Details
When? Wednesday 7 May 2025, 13:00 to 15:00
Where? Online (Zoom)
This webinar will explore current practice and challenges surrounding access and sharing of large-scale genomic data.
The webinar will include presentations focusing on the perspective of those affected by rare conditions as well as ethical and legal considerations.
Title: Sharing Genomic Data: Access, Ethics and Safety
About the Speakers
Dr Sarah Wynn, CEO for Unique
Bio: Dr Sarah Wynn has a PhD in genetics from Imperial College London followed by many years of research in London and Hong Kong.
Sarah is the CEO of Unique, an organisation that provides support, information and a voice for all those affected by rare chromosome and gene disorders. Unique has over 30,000 family members worldwide and has published over 300 information guides on rare genetic conditions.
She provides the patient voice on many committees and boards including NHS Genomics Clinical Reference Group, Joint Committee on Genomics in Medicine, and is a member of the scientific advisory boards for the NIHR Manchester Biomedical Research Centre, Manchester Rare Conditions Centre and Rare Disease Hong Kong. She is also a Trustee for RareMinds.
Talk summary: A common issue for people affected by rare conditions is a dearth of information and knowledge about how their condition will affect them/their child now and in the future. Published research and perspectives from Unique members suggest that patients and families affected by rare conditions are often keen to share data in order to improve diagnosis, grow knowledge and understanding with the hope of better treatments and care in the future. Here we will explore patients' attitudes to the benefits as well as risks of data sharing.
Miranda Mourby, Researcher in Law within the Centre for Health, Law and Emerging Technologies ('HeLEX')
Bio: Miranda is a Researcher in Law within the Centre for Health, Law and Emerging Technologies ('HeLEX') at the University of Oxford. Her work focuses on privacy, confidentiality and data protection in health and life sciences research.
Miranda joined HeLEX in 2017, and has contributed to a number of research projects involving secondary uses of health data. Her recent publications include a co-authored Dictionary of Privacy, Data Protection and Information Security. She previously practised as a barrister within NHS regulatory law.
Talk summary: The legal framework governing the use of people's genetic data is complex, and made up of privacy, confidentiality and data protection laws.
In this talk, I will focus specifically on how data protection law applies to genetic data, and polygenic scoring. I will first discuss whether this type of information can ever be considered ‘anonymous,' and out of scope of data protection law. I will then go through the data protection principles, and consider how the principle of ‘accuracy' applies to genetic profiles. Finally, I will touch on consent, transparency, and data subject rights, and the extent to which the law gives people control over their genetic data.
Dr Natalie Banner, Director of Ethics for Genomics England
Bio: Dr Natalie Banner is the Director of Ethics at Genomics England, an organisation owned by the UK Government to drive advances in genomic research and medicine, and to support the implementation of genomics in healthcare. Natalie is responsible for helping Genomics England navigate the complex ethical challenges that arise, and ensuring that the organisation is a trustworthy steward of participants' data. This includes oversight for research regulatory compliance, providing advice on meeting participant expectations, convening external expertise through an Ethics Advisory Committee, and leading an embedded "Ethics By Design" approach to Genomics England's programmes of work. She is also a member of the National Data Guardian's Panel.
She previously led the ‘Understanding Patient Data' initiative based at the Wellcome Trust. Her work combined creating accessible communications, qualitative community engagement, policy and advocacy on issues of trust relating to the use of health data, especially in the development of data-driven technologies. While at Wellcome she also led the research sector Parliamentary advocacy on GDPR as it was being taken up into domestic law. Natalie has a PhD in Philosophy and previously worked on conceptual issues relating to mental capacity and decision-making.
Talk summary: I will describe the way Genomics England's research activities are regulated, and outline our governance framework that includes stipulations on acceptable and prohibited uses of data in the National Genomic Research Library for which we are responsible. I will talk through how we navigate some of the ethical questions that emerge when trying to enable novel and innovative research - including by commercial organisations - while ensuring the data participants have generously provided is managed safely and securely. This includes embedding participant perspectives in several aspects of our governance. I'd be happy to comment on the recent media reporting and how we've responded to the questions raised by it, in discussion with our Ethics Advisory Committee and our Access Review Committee.
This session will be recorded and available via the BSGM website for members unable to attend live.
If you are unable to attend and have any questions you would like to submit in advance please send them to events@rsb.org.uk
Cost and booking
This event is free to attend and open to all BSGM members (ACGS/AGNC/CGS/CGG/FGG) as well as non-members. Advanced registration to watch live is essential through the link at the top of the page and the Zoom meeting link will be circulated ahead of the event.
Instructions to register
Contact
This event is being organised by the Royal Society of Biology for the BSGM. For any booking or website queries, please contact our events team at events@rsb.org.uk or on 020 3925 3445.For any event content queries, please contact Demetra Georgiou.