How we brought personal perspectives into conversations about genome editing

Tarun Gidwani is a philosophy PhD student and political activist who was part of a series of panel discussions at the Crick on the ethics of genome editing. Hear from Tarun about the event series, and listen to recordings of some highlights of the conversations. 




About Cut + Paste Nights

Cut + Paste Nights was a series of four live discussions at the Crick exploring the personal experiences that shape how people view questions of ethics and genome editing. 

The conversations from these events have been edited into short recordings.

Cut + Paste Nights panellist, philosophy PhD student and political activist Tarun Gidwani introduces the recordings, and describes why discussions about new medical and scientific technologies should include human stories. 

About the conversations

I grew up with a bleeding disorder that was genetically inherited. Because the treatments that managed it were virtually inaccessible where I grew up, my childhood was dramatic for the wrong reasons. Gene therapy, for me, is personal. 

If you don’t have a genetic disorder like me, or if you’re not a scientist, why would you care about gene editing? What’s fun about it? It sounds either really scary or really boring.

But these reflective conversations over four evenings at the Francis Crick Institute brought sighs and laughter (and occasional tears) among the audience. 

I was sceptical at first. As someone who grew up devastated by a severe bleeding disorder amid poverty, I was worried that the talks would focus too much on the abstract. The usual questions like ‘who decides what a disability is?’ tend to end up in an academic discussion that doesn’t move anyone. 

I also thought (incorrectly) that scientists work in the world of mechanisms— too detached to be able to engage with the everyday concerns of people like me. But together with the audience, the speakers moved between the abstract and real, not shying away from uncomfortable questions and even more uncomfortable answers. I could tell my story with all its complaints and horrors. The experience was both cathartic and insightful — and I have a feeling it’s going to be the same for you, the listener. 

A lot of what we are — from eye colour to mood swings — is genetic. But the book of our genes is not complete. My genes might tell you that I’ve had a bleeding disorder, but they won’t tell you anything about my story of having a bleeding disorder.

To scientists working at the Francis Crick Institute, genes are sites of complex biochemical processes. To me, perhaps a curse? To my grandmother, carriers of karma. To many others: a blessing, a story of their past, or a manual of strengths and weaknesses.

A gene is an object with many meanings. In each of the four evenings, Ben, the facilitator for the series of events, led a discussion that brought these different meanings together to weave a messy but beautiful picture. 

Ben often mentions during facilitating these conversations that “medicine is where science gets personal”. When something intimate becomes an object of scientific research, we must take a step back for a few moments so we can think more clearly, and more slowly. That’s exactly what these four conversations attempt to do. 

I really hope it moves you as it moved me.


How do our values and experiences change how we feel about new technologies?

The first evening brought together Monica and Michael, two sociologists, with Aurélien, a scientist from Crick.

A crowd of people seen from behind, sitting watching a panel discussion.

Monica and Michael brought both their expertise and their own intimate stories. Monica shared her story of dealing with obesity and bariatric surgery. She asked if we could meaningfully talk about obesity without discussing the commodification of food and beauty.

From the audience, I wondered the same about my own condition. I am diagnosed with a genetic bleeding disorder that made life hell in India. The hell was caused by a lack of access to treatments and by ableist beliefs.

Even though it seemed strictly biological, my suffering came more from culture, apathy and economic choices. With that in mind, I wondered if there are scientists are taking up tasks that policymakers and artists are avoiding? Shouldn’t we be working on improving access and changing beliefs while trying to repair a gene or two? 

Michael shared a story about his baby daughter that I’m never going to forget. She was born with a congenital inability to hear – she was Deaf.  Michael was confronted with the painfully difficult task of choosing for his daughter a life with or without Deafness. If life with the ability to hear was just as valuable as life with the ability, why does the choice cause so much ache?

The what, where and why of genome editing

This session got into the tricky details of gene editing—all the science-y stuff.

Three people sitting on chairs in front of an audience.

The Crick’s building, as you’ll hear Ben point out, announces to its visitors that its research changes lives.

If that’s true, that obviously raises the stakes too high because it implies that some lives need changing. Therefore, since gene editing can bring about irreversible changes to life, it is unsurprising that it evokes all kinds of personal and moral anxieties (and sometimes relief) in us. But what does gene editing really look like inside the lab? Is our moral panic responding to fantasies of genome editing that aren’t real?

Christophe, a scientist working at the Francis Crick Institute, explained the nitty-gritty of genome editing technology. CRISPR allows geneticists to point to a piece of information inside the cell and then ‘repair’ it if needed. The audience, unsurprisingly, had many questions for Christophe.

Before listening to Christophe, I thought of genome editing as an omnipotent magic wand that could bring about profoundly evil consequences in the wrong hands. It turns out that’s not really the case. A lot of genome editing is very specific. That doesn’t mean that ethical questions don’t arise in labs. They do arise, but just not in the same ways as non-scientists would usually imagine.

I always thought that it was the work in the lab that we should be morally concerned about. But after hearing from scientists in the lab, it sounds like some of the most substantive ethical dilemmas appear before lab work starts, when researchers are deciding what ‘disease’ to work on, and how.

What does genome editing mean for people with inherited conditions?

In the third session, Joe (a writer like me) and I were also asked about the choices that we have made, and those that we might have to make in the future.

Three people sitting in a row in conversation, one of them is holding a microphone.

Joe is progressively losing his already weakened ability to see. Geneticists are searching for the gene that causes the condition so that it can be ‘repaired’.

If the gene is found, Ben asked Joe, would he say yes to the treatment? Importantly, does his answer have anything to do with his passionate belief that his suffering doesn’t come from losing vision, but from losing vision in a society that overvalues people who can see clearly? Listen to Joe beautifully lay out the ambiguity he feels in response to the question.  

My own answer was a firm yes. Haemophilia wrecked me—alongside my family. It bought loans and hospital visits and blame and extreme violence. Of course, each of those things gave me something valuable. But overall, my life would have been better without it.

I say this without once thinking that disabled lives are less valuable. Each life is valuable, but each suffering also deserves relief. You’ll hear me argue that if there were a technology that could bring that relief, we should jump at it. (And I really mean ‘we’, and not just a few pharmaceutical giants). 

What does genome editing mean for global health equality?

The concluding session brought together Marie, a social scientist, and Rifdat, a Crick scientist.

Three people sitting in a row alongside one person standing, who is speaking into a microphone. They are facing an audience and to the right is a screen showing a transcription of their words.

Rifdat explains how she primarily works on genes important for heart development in people with Down syndrome. That sounds like an undeniably noble idea, right? At first glance, yes.

But Marie and Rifdat together then use the example of this work to ask bigger questions about the worthiness of life with different conditions—who decides what kinds of medical conditions are worth editing out of our genes?

It seems like a subjective decision that every person should be able to make for themself. But science demands objectivity. It demands it not just in the data it produces but also in the prioritisation that it assigns to different conditions.

What kind of framework can a geneticist use to help them figure out what medical conditions are worth pursuing? This last conversation gets as deep as it can get. 

Recording transcripts

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