Genetopia – The compelling stories and tensions behind genetic testing

What springs to mind when thinking about genetic testing? You would expect the answer to be something about families, heredity, susceptibility to disease, and relationships. Yet, in an age when conversation seems to fixate more on the practicalities of data storage, and the fear of how your personal data may be used against you by insurers, it’s easy to forget about the impact genetics is having on real individuals and their families in the face of disease vulnerability.

Chrystal Ding, a creative photographer interested in the translation of complex scientific concepts into art, approached the Wellcome Genome Campus Society and Ethics Research team with an ambitious creative endeavour to connect the science of genetic testing with the families, the bloodlines, and the network of lives that are affected when one person investigates their DNA.

The Genetopia project presents real stories relating to genetic discovery to give a compelling visual representation of the human experience and tension behind the scientific data.

Genetopia Stories

By Chrystal Ding, Artist, Photographer, Writer, and Creative Director for Genetopia. 

2017 was the year that the number of people doing consumer DNA tests doubled . With over 17 million people now estimated to have done direct-to-consumer DNA tests and the market forecast to almost double again in the next three years, the growing interest in personal DNA testing shows no sign of stopping.

DNA is central to our existence as a species, and yet it is a double-edged sword when it comes to questions of moral choice, emotional impact, and data ownership. Every year seems to bring us a step closer to science fiction. In 2018, He Jiankui claimed to have created the first genetically engineered babies, and earlier this year Family Tree DNA was subject to media scrutiny for sharing data with the FBI. While the hype makes for attractive headlines, it is unclear how much people actually understand the risks and opportunities involved in undertaking DNA testing in their own lives.

As the arts/humanities child of a family of scientists, I have long been interested in the problem of crossing the threshold between scientific research and personal understanding. I first spoke to Anna Middleton of the Wellcome Genome Campus, Society and Ethics team in the summer of 2017 – Anna’s story features in the book. Our discussions were instrumental in shaping how I approached the project. While the science of genomics is complex and unlikely to be the topic of dinner table discussion for most of us, everyone can talk about family, heredity, and personal identity. Those are the conversations I set out to open up.

What is Genetopia? 

Genetopia

noun: an imagined place or state of things in which everything is perfect/bad. 

Over the course of two years, I interviewed 23 individuals from around the world about their experiences with DNA testing. The individuals shared medical records, family photographs and other personal documents to illustrate their stories. These texts and images are accompanied by a photographic portrait and a visualisation of DNA results that open each chapter of the book. Between them, the 23 individuals present a complex landscape of unexpected familial discoveries, life-threatening genetic mutations, and deep commitment to personal and ancestral heritage.

With thanks to The Wellcome Genome Campus, Society and Ethics Research team: 

I owe a huge debt of gratitude to Anna and Lauren at Wellcome Genome Campus Society and Ethics Research, a part of Connecting Science for their support throughout the making of the project, and also in commissioning the final work that is now on display in Hinxton for public viewing. I am also extremely grateful to the 23 individuals who shared their stories with me. There were more than a few tears shed in the telling, which is itself a small a reflection of how deeply personal our collective journey to understanding genomics is. Although the project is by no means exhaustive in its attempt to capture the routes through which people have engaged with the subject, my hope is that it will shed some light on what the personal implications of DNA testing might be as the worlds of scientific research and consumer experience continue to collide.

[1] https://www.technologyreview.com/s/610233/2017-was-the-year-consumer-dna-testing-blew-up/

Find out more:

Genetopia is currently on public display at Wellcome Genome Campus, Conference Centre. Come along to one of the Connecting Science Open Saturdays to take a look.

You can find out more about the Wellcome Genome Campus Society and Ethics Research team here.

About the author: 

Chrystal is an Artist, Photographer, Writer and Co-Founder of Ixy Labs, a research and discussion series about private life in the time of A.I. She was born in Harbin (China) and is currently based in London (UK).
She studied English at the University of Cambridge, Photojournalism & Documentary Photography at London College of Communication, and worked as a Strategic Innovation Director in a media agency building innovation models for brands and running creative ideation workshops. She has since worked in A.I. and games.

Her work explores the intersection of technological advancement with the inner world of emotions and personal identity.

Visit Chrystal’s website to find out more about her creative projects.

 

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