Chrystal is a research-led artist who works with photography, writing, personal archives, and data to explore the impact of past (trauma) and future (technological advancement) on identity.
Hear Chrystal speak about her work in our event Decoding the Personal that took place in August 2020.
How would you describe your arts practice?
I work in a very topic-driven way. I start with questions that I want to explore and find collaborators to help me understand the thing I’m exploring. Then I mainly act as the vehicle for collating and compiling narratives and putting them out into the world, so a lot of what I do is finding stuff, unpacking it, then linking it back together in a way that engages fellow ‘outsiders’ like me.
What was it that first attracted you to the subject of genetics in your work? How did Genetopia come about?
It was 2017, I was studying for my MA, and lots of people around me were talking about consumer DNA tests and I started to wonder: is anyone thinking about what happens after you receive the results? What if you find out something unexpected? How do you process that? What’s the relationship between DNA and identity? For me personally, I saw that at the time 23andMe were offering results for risk of developing Alzheimer’s, and knowing that we have Alzheimer’s in my family, I wondered what it might mean to see the risk made explicit, how it might make me feel to see it written down. The more I dug into it, the more I thought that people should be talking about these things, and sharing their stories.
Becky-Dee and her two brothers were conceived by IUI (Intrauterine insemination) of sperm from an anonymous donor. Their mother is Dutch, and they grew up in Australia. They do not know anything about their biological father except that he was blond, 6’2, and had blue eyes. Recently Becky-Dee did a 23andMe DNA test to try to find out more.
Australian donors cannot be paid for sperm donations and the country is currently suffering from a shortage of sperm donation. Around the time that Becky-Dee was conceived, there was very limited information available about the sperm donors and their anonymity was fiercely protected.
Dan runs technology start-ups and was interested in the technology side of 23andMe. He did his DNA test in 2014, the year that the company first launched in the UK. Having grown up in Essex as a white man, he was surprised to find out that his ethnic heritage was in fact 43.5% South Asian and that the man he had thought of as his father was not actually his biological father.
How did you approach participants for the project?
I would explain to them what I was doing, that I was working on making a book, that I wanted to work with them to explore their personal archives, and representations of their genetic data, and try to understand what their story was in order to figure out how best to show it. So it would always begin with the interview, then the portrait, and then often the personal material would follow later once we’d worked out what the story was.
What was the experience of documenting these stories like? Did you feel a sense of responsibility to your participants?
It was quite nerve-wracking. At first it seems like quite a ‘tame’ subject matter in that there were no overt risks or grand journeys to make. I would often find myself simply having coffee in someone’s home and listening to them tell me about their family. But when you start digging into personal histories and archives, it quickly becomes very sensitive, and that can be quite unexpected for the participants. Which sort of feels like the point of the project. That when you actually examine the story, it isn’t straightforward. It makes you feel stuff. And that’s important, because those are the feelings you have to live with. Genomics is a science indelibly wound up with identity, with family, with health, because even when you’re talking about an individual it’s never just about that individual, and that’s not something to be taken lightly. I feel privileged to have been trusted by the participants to share their stories.
Bernie & Levi
Bernie and Levi have both done AncestryDNA and 23andMe DNA tests. Their journey began when Bernie bought Levi a DNA test to see if he was interested in finding out about his father, who he didn’t know growing up. Bernie is American and Levi is English. They have lived in Hollywood and currently live in Leigh-on-Sea in England. Both Levi and Bernie discovered that their fathers were not who they had known them to be.
Levi: “To me it’s like going to the shoreline and going ‘This is cool, wouldn’t it be cool to flip this big boulder over and have a look underneath?’ And you kind of go ‘Come on let’s do it!’ like boys do. And you flip it over and you have a good look and you’re like ‘Oh my God! This is horrible!’ You find out all kinds of weird stuff. You have to be prepared.”
Did your own curiosity around genetics change throughout the project? At what point in the project did you do your own DNA test?
I did my own DNA test before I interviewed anyone. I have a rule for myself that where possible I have to try and get as close to the participant’s experience as I can, so I wanted to understand what it felt like to do one. Over time my interest has shifted to what happens to the data afterwards, and how our literacy around genetic data isn’t nearly as heightened as our awareness of other types of data. For example, I started looking into the Concordat and Moratorium on insurers being able to access consumer DNA, which is an ever-evolving issue (it’s now been replaced by an agreement between the government and the Association of British Insurers) and wondering what the hidden or unobvious implications of sharing genetic data might be. As a species we have a long history of misrepresenting nature vs nurture; it’s a particularly pertinent issue right now, and it’s what I’m trying to get my head around these days. I’m currently reading Angela Saini’s Superior: The Return of Race Science, which I would recommend alongside Siddartha Mukherjee’s The Gene: An Intimate History.
How did your connection with the Wellcome Genome Campus come about and how did they support the project?
That was really a stroke of good timing and luck. I had emailed the Association of Genetic Nurses and Counsellors hoping to interview a Genetic Counsellor for the project, and my email ended up in the inbox of Professor Anna Middleton. We started to talk about her personal story, and about what the Society and Ethics Research department at the Wellcome Genome Campus does, and we realised that our work was quite aligned. She later commissioned the book for WGC, and that’s how the book came into being.
What do you hope that readers take away from the project?
I want readers to get a sense of the topic from multiple angles and think about it for themselves. My hope is that they can relate to at least a few of the stories in there, and that the stories the participants have shared highlight some of the complexities of the subject. In the end it’s complexity that fascinates me, and how to make that accessible.