BSMS > Research > Clinical and experimental medicine > Theoretical and Empirical Bioethics > Helix of Love

Helix of Love

Helix of Love is a major output from the Wellcome Trust funded ‘Ethical Preparedness in Genomic Medicine (EPPiGEN) project (grant number: 208053/A/17/Z) based at Brighton and Sussex Medical School and the University of Oxford.

The collection of poems is written by parents of children with rare genetic conditions who have been participating in an EPPiGEN research project using arts-based methods to explore and share the lived experience of rare disease. The project more widely, and the poems in Helix, focus upon what everyday life is like for families touched by rare disease at a time when so much focuses on the promise of genomic medicine. As such the work offers invaluable insights to those planning and providing care for families.

A purple background with white writing reading helix of love and a heart with dna in the middle

The BSMS EPPiGEN team are Professor Bobbie Farsides (Co-PI) and Dr Rich Gorman (Research Fellow). You can learn more about Bobbie and Rich’s work below.

Prof Bobbie Farsides
Co-Principal Investigator

Dr Rich Gorman
Research Fellow

About Helix of Love

Over a series of workshops with arts practitioner and poet, Dawn Gorman, participants developed a poetic voice for exploring the varying ways that rare disease, and the sometimes seemingly distant promises of genomic medicine, have shaped and continue to shape their lives. The final volume was genuinely co-produced by the poets, the BSMS EPPiGEN team, and importantly by Dawn, whose expertise and guidance were invaluable.

Helix of Love has received critical acclaim from stakeholders across the genomics sector, has become part of library and museum collections, and was incorporated into the NHS-led International Genomics Education and Training Summit in November 2023 when it was distributed as a training resource to delegates from 49 countries.

For further information about the collection, or the EPPiGEN project, please contact b.farsides@bsms.ac.uk and r.gorman@bsms.ac.uk.

Read Helix of Love

Helix of Love is free to read online below. Please feel free to share this link widely. We encourage use at training events, conferences, meetings, etc. but we ask that you cite the work and that you do not extract individual poems for use without permission. On request we can share a number of examples of how poems have been shared nationally and internationally to great effect.

Read Helix of Love here >

Citing Helix of Love: “Helix of Love was produced through the Wellcome Trust funded EPPiGEN project (208053/A/17/Z) and published at Brighton and Sussex Medical School”.

Request Helix of Love

A limited run of Helix of Love was published and printed in 2023, and distributed to healthcare professionals and other rare disease stakeholders around the world. We have a small number of copies remaining, and for organisations interested in obtaining larger numbers of hard copies we can arrange additional print-runs at cost price – please contact r.gorman@bsms.ac.uk.

Contributors

Paul Arvidson

Paul is already an author of Sci-Fi (featuring Space Hobbits on a lightless planet) and Thrillers (featuring a Sweary Teen in a wheelchair righting wrongs.) This is his first time since college writing poetry. It was freaking terrifying. He lives with his wife and two daughters and a varying number of pets in the beautiful Somerset countryside.

Lisa Beaton

I’m a mum to four children all of whom have a congenital medical and/or neurodevelopmental disorder; our two youngest children have an as yet, unknown neuromuscular disorder. We live in North Yorkshire with two excitable dogs and a long-suffering cat! It’s a close call as to whether we are functionally dysfunctional or dysfunctionally functioning but baking and eating cakes features strongly in my skill set.

Alex Davey

Alex Davey is a botanist and mum living in Dunbar, southeast Scotland. She has three children: two fiercely independent and loving girls and one beautiful boy, Benjamin, who passed away from an unknown genetic condition in 2021, aged seven. Benjamin introduced Alex to many new friends among the disabled community, through whom she learned about the social model, the challenges of achieving equity, inclusion and access, and with whom she began the long, winding journey to discovering her own neurodivergence.

Lorna Fillingham

Lorna Fillingham is a mum who lives in North Lincolnshire. She has two children, the eldest of whom has severe physical and learning disabilities as a result of a rare genetic condition. In her spare time she fights for disability rights, as she has realised that her daughter is disabled as much by the built environment, by society and by attitudes, as she is disabled by her actual genetic condition. Together, she believes, we can build a better future.

Jillian Hastings Ward

Writing poetry during this project has taken me to some difficult places, but also allowed me to share some of the joy I find in small things. People look at our lives from the outside and make huge assumptions; projects like this are so important in sharing our realities. I’m proud to have helped to bring this project together and am inspired by my fellow writers. I hope you find a lot of food for thought here too.

Jo Wright

I’ve spent my whole career working with children and adults with learning disabilities. As a special education teacher, I prided myself on the relationships I was able to build with the children I supported and those who cared and advocated for them. However, it wasn’t until I had a child of my own, with a rare undiagnosed genetic condition, that I truly began to understand their experiences and how those can affect interactions and relationships with health and education services. I’m proud to be part of this project, of the work that we have produced collectively, and the powerful insight it gives into the complexities of living as part of a family affected by a rare disease.

Reactions

"This collection is so moving and true! It shows what poetry can do, and why the genetic story is incomplete unless it includes life itself." – Professor Tom Shakespeare, London School of Hygiene & Tropical Medicine

"Helix of Love is an inspirational collection of poems written by parents who share their hopes, fears, laughter, tears and above all love for their amazing children who live with rare genetic conditions." – Louise Fish, Chief Executive, Genetic Alliance UK

"This collection of extraordinary poems is a real triumph: vivid, heart-wrenching and hopeful. It's a must read for anyone involved in designing services for or supporting children and families with rare conditions." – Dr Richard Scott, Chief Medical Officer and Deputy CEO, Genomics England

"Research outputs come in all shapes and sizes meaning there are many valuable ways in which to describe and delineate the experiences, unique and common, of parents of children with rare genetic conditions. This extraordinary and effecting collection demonstrates the power that literature - poetry in particular - can have in shining new and sometimes astonishing light on the uncertainties, anxieties and above all acts of love, that these families chose to share with us." – Dr Dan O’Connor, Head of Research Environment, Wellcome Trust

Watch the launch event

In September 2023 we hosted a launch event for Helix of Love. The event featured readings and reflections from the poets, alongside a panel discussion which involved 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 BSMS.
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.

The event reflected on the themes raised by the poems in the collection, as well as the relationship between poetry and medicine more broadly. Particularly, discussions considered 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.

You can watch a recording of the launch event below.

BACKGROUND IMAGE FOR PANEL

More about EPPiGEN

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.

A vital aspect of this project has involved using artistic and creative approaches to collect stories from families affected by rare genetic conditions. Our aim has been to understand their hopes, expectations, and worries, and to provide an outlet for reflecting on what everyday life is like at a time when so much focuses on the promise of genomic medicine. We have worked in partnership with a group of families affected by rare genetic conditions to think imaginatively and critically about just how accounts of patient experience can be collected, collated, curated, and disseminated. Our participants have explored telling their stories through creative writing, stop-motion animation, collage, and now… poetry.