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, its 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 were 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 (JRN86).

A film is different from a book. In The Gene we wereable 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 Columbias medical center, who has spent most of her life on an odyssey to find the gene for Huntingtons, a disease that killed her mother. Luke Rosen and Sally Jackson, parents on a tireless quest to raise awareness for their daughters 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 loadthe amount ofvirus present in any sample taken from a patientand 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. Wed like to see the film spark a national conversation. The National Institute of Healths 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.

More here:
Siddhartha Mukherjee and Ken Burns Present PBS Premiere of 'The Gene: An Intimate History' - Columbia University

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