About this Event
Please join us at this online event to celebrate the publication of Helix of Love – a collection of poems written by parents of children with rare genetic conditions who explore the lived experience of rare disease, and reflect on what everyday life is like at a time when so much focuses on the promise of genomic medicine.
The evening will include readings and reflections from the poets themselves, and an informal panel discussion chaired by Professor Bobbie Farsides, Professor of Clinical and Biomedical Ethics at BSMS and Co-PI of the ‘Ethical Preparedness in Genomic Medicine’ (EppiGen) project, and involve contributions from:
- Professor Anneke Lucassen, Professor of Genomic Medicine and Director of the Centre for Personalised Medicine at the University of Oxford, Co-PI EppiGen.
- Professor Felicity Boardman, Professor of Social Science in Genomics at the University of Warwick.
- Professor Somnath Mukhopadhyay, Chair of Paediatrics at the Royal Alexandra Children’s Hospital and Brighton and Sussex Medical School.
- Dr Helen Johnson, Principal Lecturer in Psychology and Co-Director of the Centre for Arts and Wellbeing, University of Brighton.
- Dawn Gorman, award-winning arts practitioner and poet and creative facilitator of Helix of Love.
Discussions will reflect on the themes raised by the poems in the collection, as well as the relationship between poetry and medicine more broadly. The poets are particularly keen to consider how poetry might help support healthcare professionals to be more ethically prepared for challenging clinical encounters, to highlight the importance that language plays in medicine, and to underline the value of understanding lived experience in order to aid and enhance clinical practice.
Background
The collection was produced as part of the ‘Ethical Preparedness in Genomic Medicine’ (EppiGen) project, a large collaborative research programme funded by The Wellcome Trust and based at Brighton and Sussex Medical School and the University of Oxford. The project explores the ethical issues associated with the mainstreaming of genomic medicine (the use of an individual’s genomic information, which includes their DNA sequence and any associated genetic variations, to diagnose, treat, understand and perhaps prevent disease and disability) and asks how we might become ethically prepared to meet the challenges posed in this growing area of medicine.
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