Siddhartha Mukherjee and Ken Burns Present PBS Premiere of ‘The Gene: An Intimate History’

The ability to modify genes and prevent disease has exploded in the last decade. It is now possible to use gene therapy to cure inherited disorders, to correct genetic defects and to limit the severity of a disease. But this new era in genomic medicine offers both promise and peril.

“These revolutionary discoveries highlight the awesome responsibility that we have to make wise decisions, not just for the people alive today, but for generations to come,” said Siddhartha Mukherjee, an assistant professor of medicine at Columbia University Irving Medical Center, staff cancer physician and author of The Gene: An Intimate History.

This month, PBS will premiere Ken Burns Presents the Gene: An Intimate History, a four-hour, two-part documentary based on The Gene to air April 7 and 14 on PBS stations nationwide. The series, like the book, weaves together science, history and stories of individuals and families, including Mukherjee’s account of his own family and its recurring pattern of mental illness.

The Gene airs at a critical moment for the science community, as geneticists around the world grapple with the ethical questions these technologies raise. In Nov. 2018, a Chinese researcher stunned and horrified the scientific community with the announcement that he had created the first genetically edited babies, twin girls born in China.

The documentary had been cut and finished just before the first cases of coronavirus were reported in China, so it was too late to include what would soon become the COVID-19 pandemic, “a global crisis inextricably tied to our genes,” Mukherjee said.

“A piece of genetic material—29,000-odd nucleotides of RNA—coated with protein has upended the world,” Mukherjee said. “Virtually every technology we're using to track and treat COVID-19, even an oral or nasal swab to detect whether you are infected, relies on genetic techniques.”

Columbia News spoke with Mukherjee about the impact of genes on our lives and identity, the process of turning a book into a film and how genetic technologies could shed light on the mysteries of COVID-19.

Q. In your book, you describe the gene as “one of the most powerful and dangerous ideas in the history of science.” Could you explain?

A. Genes are powerful because they contain the definition of ourselves, our ancestors and, by passing them on to our children, the fate of future generations. This is not to make the reductionist claim that everything is genetic. It is not to diminish the role of environment, or chance and triggers. But it is to emphasize the centrality of genes in shaping who we are.

I used the word “dangerous” because genetics raises and complicates the idea of what we can control and manipulate.

The challenge with all of these groundbreaking developments is that DNA is not just a genetic code; it is in some sense also a moral code. Now that we have these tools, we not only have the capacity to ask the question what will we become, we have the capacity to ask what can we become?

Perhaps the most grotesque example of the misuse of the language of genetics is the Nazi eugenics program in the 1930s. The Nazis distorted the language of genes to imagine creating a genetically superior nation—and then this was used to justify imprisonment and mass extermination.

Q. You and Burns have worked together in the past. Could you describe the collaborative process of turning a book into a documentary?

A. First of all, it’s an incredible collaboration. When Ken and I launch a film we begin with talks about the book, both of us excited and aware that we are wading into the unknown. We take long walks through Central Park and ask questions outside the nitty gritty of the film: What is the mood of the film? What are the primary messages we’re trying to convey?  I was lucky to work on The Gene with largely the same production team that adapted my first book, The Emperor of All Maladies: A Biography of Cancer, including the incredible filmmaker Barak Goodman (JRN’86).

A film is different from a book. In The Gene we were able to include a trove of historical footage and humanize the inspiring stories of patients and their families seeking cures for their genetic disease. People like Nancy Wexler, professor of neuropsychology at Columbia’s medical center, who has spent most of her life on an odyssey to find the gene for Huntington’s, a disease that killed her mother. Luke Rosen and Sally Jackson, parents on a tireless quest to raise awareness for their daughter’s rare degenerative disease. These personal stories help genetics come to life, but they also highlight how much we still do not know. I hope people will find the mood of our film somber, thoughtful and hopeful.

Q. For $200 a person can order a profile of his or her genome that provides ancestral information, as well as genetic health risks. Do you see this as a positive societal development?

A. The question you have to ask is do we want to live in a world where you can send a sample of saliva and find out that you have a 10 percent or 20 percent risk of developing breast cancer in the next 30 years. This information can be useful, motivating you to adopt more positive health behaviors. But it also marks you, changes you. It can change your relationship with yourself, your body. When you decide to test for future risk you are also, inevitably, asking yourself, what kind of future am I willing to risk?

Q. Could genetics play a role in how vulnerable a person is to contracting COVID-19, and whether that person is more at risk of dying from the illness?

A. This is one of the great mysteries of this infection. Young, healthy people are dying, even if most serious cases occur in the elderly and those with pre-existing conditions. There are multiple studies trying to unravel why some people infected with SARS-Cov2, the virus that causes COVID-19, fall seriously ill, while others show only mild or nonexistent symptoms. We are finding a correlation between high viral load—the amount of virus present in any sample taken from a patient—and more severe illness.

As I argued recently in The New Yorker, we have done a good job measuring the spread of the virus across populations, but it is now time we learn more about how SARS-Cov2 behaves in the body. This requires large-scale efforts to collect the DNA of people and the virus that they are infected with. One example of a study might be taking the DNA of those with serious underlying disease and comparing it to the DNA of those with mild or asymptomatic cases. We need to determine whether genetic variations among humans affect how susceptible individuals are to COVID-19 infections as rapidly as possible.

Q. What would you like audiences will take away from the film?

A. We hope The Gene will help people understand that the story of the revolution in genetics that is transforming medical science is also the story of what makes us who we are. We’d like to see the film spark a national conversation. The National Institute of Health’s National Human Genome Research Institute, our outreach and education partner, is planning many activities. We are in conversations with people in cities across the country, including policymakers and science educators, right down to the primary school level, to take part in discussions and host screenings.

In the next few weeks NIH will launch an interactive digital platform that will go beyond the book and film, adding discussion of the COVID-19 pandemic. After you watch the film, please keep up with us on Twitter to learn more about these activities. Visit @DrSidMukherjee, @KenBurns and @WETA (our producing public media station). Stay tuned.