Siddhartha Mukherjee: Genes are personal

In an interview, Pulitzer-prize winning author Siddhartha Mukherjee talks about his latest book, “The Gene: An Intimate History”, his work as an oncologist and what affects him personally. Excerpts:

“The Gene” is subtitled “An Intimate History”, and a very personal story runs through it. Can you explain what that is?

The book gets intimate from the first page. I have two uncles who have schizophrenia and bipolar disease and then one of my cousins, also from my father’s side, was diagnosed with schizophrenia and institutionalised. So that story hung over my childhood and raised questions that were very urgent. Would I be affected? Was there a genetic predisposition? What was happening in my family? We’re often tempted to think about genes in terms of laboratories or universities, but of course it’s personal: it’s your story, it’s my story, it’s a story of how hereditary factors influence our lives. It’s the question that we’ve all wondered about. Why do we look like this? Why do we behave like this? Why are we like this?

Did you uncover things about yourself?

Absolutely. I had blocked out anything to do with mental illness. I didn’t want to understand partly because I was too fearful of understanding, but then this book allowed me to answer that with a clarity I would have otherwise lacked. When you have a history like this, amazing forces of denial rise inside you. Much of my childhood and my family was organised around the idea that it wasn’t there.

What you wrote about your mother’s experience of being an identical twin was very moving. The idea of the twin, with the same genome, but shaped differently by experience, as a shadow self living another life, was very powerful. Did you ever think about your shadow self? What he might be doing now?

That’s a wonderful question. You know if you think about genes in a deep way, you do have to think about alternative lives because you have to think about what would happen if that same set of genes, that same self, was put under very different circumstances. It’s a natural question that arises. I think everyone thinks about alternative lives. We have fictional doppelgängers. That idea has been around a long time, but our knowledge of genes has increased our anxieties around it.

Though you’ve carefully avoided the question...

I could certainly still be in India. Perhaps never having left the neighbourhood that I grew up in. I could easily have not been a scientist ... it could have been very, very different.

Though you already embody a number of alternate selves, don’t you? You’re a research scientist and a practising oncologist and an award-winning writer. It’s quite a lot for any one person, isn’t it?

Yes. I mean I try to fulfil my roles. I try to always turn back to patients. And almost all the research I do is focused on moving medicine forward. So in some ways by restricting the themes, I find it actually becomes much easier.

Your scientific work sounds incredibly involving and intellectually complex ... it did make me wonder where this drive to write books as well comes from?

This book came out of a need to describe what it was that I was looking for in trying to search for answers for my family illness. What that means and what it would mean for the future. It starts as a memoir and only afterwards does it become an exploration of history and other things. There was a real urgency that I needed to explore this.

Your last book, a biography of cancer, “The Emperor of All Maladies”, won a Pulitzer prize. That must be a tough gig to follow?

It was very important to write completely afresh. I always thought this would be a memoir but it started growing on its own accord. Books are like that. They take off and then you have to follow them.

The extract in the “New Yorker” recently about epigenetics provoked a quite violent backlash from biologists. They accused you of oversimplifying. Did that come as something of a shock?

It was an excerpt and in retrospect, I could have emphasised more of the material on the foundational role of gene regulation ... it was covered at length in the book. It was three pages out of a 600-page book.

In your work as an oncologist, you’ve talked about being with people in their most terrifying moments as a “transcendental experience”. I wondered what you meant by that.

It’s not spiritual. It means it transcends ordinary things. Most of us don’t experience that moment in which we’re interacting with someone facing their own death. It’s an unbelievable moment but in oncology you do this every day. And you encounter people with astonishing resilience. With startling internal resources.

How does that affect you personally?

Some people find themselves dejected by this, I find myself energised. Every clinic visit for me is a source of energy. I find myself understanding more. I find myself respecting more. I find myself learning more every time I’ve been in the clinics or the wards.

Does it affect how you think about life and death?

Absolutely it does. I mean I don’t have a formulaic response to life and death. The one thing I’ve learnt is that people’s response to dying is extremely different. It ranges widely and there is no archetypal response.

In the West though, death tends to be treated as a medical condition rather than a philosophical concept. People end up in the hospital attached to machines...

Absolutely, and I’ve written about this. My grandmother’s death was a signature moment for me. It was one of the most dignified deaths I have ever witnessed. Dying at home, without machines, can be very beautiful.

At 45, you’re still young in terms of your career. What’s next?

I’m basically trying to understand how the intersection of medicine and biology and culture enables who we are. I’m still trying to understand that over and over again. Every book is about trying to understand that intersection. I don’t know if I’ll write another book. I mean, I write books when I get confused.

And your scientific ambitions?

We’re working on leukaemia mainly and blood formation, a little bit of work on bone formation. A lot of the work that we’re doing is trying to figure out new ways of curing leukaemia.

Are you hopeful that there will be a cure?

I’m very hopeful. Every year has brought a kind of clarity about what works and what doesn’t work and how we can move things forward in trying to take care of a disease that has so many different manifestations and yet has some core similarities across these manifestations.

An article in US “Vogue” described you and your wife — the sculptor, Sarah Sze — as New York’s most brilliant couple. That seems like quite a lot to live up to...

We don’t seem like New York’s most brilliant on most days. I feel as if I’m spending my time, you know, getting through the day, paying the parking tickets, going to work at the hospital and trying to write and finish a book. I don’t feel particularly brilliant a lot of the time.

The article also said that when she went to the Venice Biennale, you not only remodelled the kitchen as a surprise, but you also bought a summer house. You’re setting quite a high bar for husbands everywhere...

It’s not like I was sitting there with a hammer and nails making a new kitchen ... The house was empty, and our kitchen was falling apart, so I hired a friend of ours who is an amazing architect. We had to move out while this was being done so that’s why I found another place. Far from being a rather glamorous enterprise, it was motivated by the fact that we can barely keep our lives together.

At the end of the book, you say that the influence of genes on our lives is richer, deeper and more unnerving than we had imagined. In what way?

Genes are an incredibly important factor in determining who we are as ourselves. That idea I find very unnerving. We know we’re dominated by the vagaries or the ups and downs of fate and chance and destiny and random accidents and so forth. But behind that, there’s a kind of predisposition or structure. And it’s those predispositions and structures which I think are governed by genes. That’s what we’re trying to figure out and I find that to be fascinating.

Do you think about it when you look at your children and think about how to bring them up?

I have two daughters, six and 11, and I think it’s every parent’s dilemma to figure out how genes and environments and chance will result in the unique human beings that are your children. I think it’s every parent’s conundrum and that’s why the conundrum I try to get to in the book. But you know ... you can’t live your life as if you’re in a clinical trial.

–Guardian News & Media Ltd