Deborah Zoe Laufer on identity, genetic inheritance, cultural sensitivity, storytelling about science, and Informed Consent

Interview by Rich Kelley

What inspired you to write Informed Consent?

One of the great things about being a playwright is that I can write about whatever I want to read about. It’s an excuse to do a ton of research that I wouldn’t usually give myself the time to do. I’ve wanted to learn more about the genome, so I crowd-sourced Facebook for ideas/articles that might be the jumping off point for my next play.

A friend sent me the New York Times article about the court case between the Havasupai Native Americans, who live on the floor of the Grand Canyon, and Arizona State University. I learned subsequently that it was a landmark case concerning informed consent, and has changed the laws about what needs to be specified in consent forms for scientific research on human subjects. But what fascinated me at first was the clash of cultures, and the intersection of science and religion. And learning more about the genome, I realized questions of identity are much more complicated than we once thought.

Informed Consent began its life as part of the EST/Sloan Project, an initiative between the Sloan Foundation and the Ensemble Studio Theatre to fund new plays about science, and is being produced by Primary Stages this August. Can you share with us how this process worked and how the play changed along the way?

I wrote a proposal for a Sloan commission as soon as I read the article. My play End Days had been produced at EST through the EST/Sloan Project. It’s remarkable, the work they do – every arts project concerning science and technology that I go to for research, (I’m a huge fan of Radiolab, for one), – has been funded by the Sloan. My friend, Sean Daniels, who was then at the Geva Theatre Center in Rochester, took a first draft to their literary department and they asked to produce it. EST, generously, gave their okay, so it started out at Geva and Cleveland Playhouse (a co-producer). It was wonderful to have a chance to work on it out of town with Sean. It’s morphed a lot since then – I cut around fifteen minutes and strengthened the Native American story. And then Primary Stages signed on to co-produce with EST at The Duke on 42nd Street later this year.

What kind of research did you do to write the play?

This play required research in so many areas. I still kind of marvel that I actually stopped researching and wrote the thing. I read dozens of articles and books about the Havasupai, genomic science, the history of informed consent, race, and early onset Alzheimer’s.

The EST/Sloan Project sent me to visit the reservation – I stayed at the Havasupai Lodge in the Grand Canyon and visited the clinic where the blood was collected. I think getting to see firsthand what their circumstances are was the most powerful research I did. They have the third highest rate of diabetes in the world, and most of their food is shipped in. It was 117 degrees when I was there, and to keep anything fresh other than big blocks of cheese and processed foods would have been prohibitively expensive. When their reservation was decreased in size from millions of acres to thousands, their water access was restricted, so farming and hunting became nearly impossible. Learning just what they have to contend with was crucial in my rewrites.

I also spent some time in a lab at the University of Pennsylvania, run by my friend Ben Stanger (who had sent me the article) where I got to go to lab meetings and extract DNA from cancer cells. There are so many themes and issues about identity woven through the play that were raised for me as I learned about the genome – that there is no genetic marker for “race.” That we are 99.9% the same genetically. And I grappled with a lot of questions about what would I want to know about my future, or my children’s future now that genomic research is providing more and more information. They’re questions our parents never had to ask themselves.

The action in Informed Consent was inspired by the lawsuit filed by the Havasupai tribe against Arizona State University for doing unauthorized research on blood drawn from members of the tribe. How does the play differ from what happened in that case?

One of the things I’ve grappled with in this play is that I’m a non-native, telling this incredibly sensitive story about a specific tribe. I’m still grappling with it, honestly. The play touches on a lot of themes beyond that court case, asking questions about identity. Are we the sum of our genetic makeup? Are we our memories? Who gets to tell the stories that are told in our society? There are themes about what gets passed down from mother to daughter, and how that inheritance goes far beyond the physical. I wanted to give the scientist a compelling personal narrative that parallels her professional interaction with the tribe, so I’ve fictionalized much of her story. That is, hopefully, deeply satisfying dramaturgically, but I’m determined to give the representative of the tribe as compelling a story, so I’m fictionalizing it as well. Telling a story inspired by real events, there’s a tremendous responsibility to honor the people involved, and not do more harm than good. And that weighs on me heavily.

Informed Consent tackles controversial issues involving the clash of cultures between a Native American tribe eager to preserve its traditions yet in need of medical help to survive and the scientific community excited by the prospect of doing research on a closed community. The tribe wanted to be very specific about how its blood was being used but many scientists argue that the “potential benefit from unencumbered biomedical research trumps the value of individual control.” Does the play take sides in this debate?

I don’t ever aim to “take sides” in my plays. I’m much more interested in raising questions than offering any answers. I don’t have any answers. Hopefully I explore the subject with enough depth and emotional impact that an audience will be provoked to discuss it and mull the themes over after the lights come up.

At the center of the play is the geneticist Jillian, whom you describe as “the smartest person in the room.” She is driven, terrifically passionate about her work and excited about its possibilities, yet with that come blind spots, interpersonally and culturally. Are you saying something about the nature of contemporary science through her character?

I hope not! I think we all grapple with understanding other cultures – it takes a lot of time and a real commitment to truly understand what’s important to someone else and respect it. It can’t be done with a piece of paper. So the considerations that are critical when getting permissions in science are probably true of all our social and professional interactions with each other. It’s just glaringly obvious in terms of informed consent. And, with all we’re able to discern from a blood sample now, and the unfathomable things we’ll be able to learn far into the future, it’s not such a simple thing to give over one’s genetic material. It’s sharing private information in a previously unprecedented way. And it’s so hard to protect against possibilities we can’t even predict.

How have scientists responded to the play?

There’s been a tremendously enthusiastic response to the play from scientists and doctors, and also from the members of the Native American tribes who’ve seen or read it. This is a court case that really changed not only the actual consent form to be signed by the participants – it’s made the medical community look at the depth of understanding needed on both sides before people can truly know what they’re consenting to. I hope that the play represents both the scientist and the tribe members who took part in the study with depth – real, multifaceted people with personal concerns outside these issues that informed what they brought to this case.

At Geva, the Rochester Medical Center bought out the theater one night so that all its doctors and scientists could see the play. They invited the local Seneca tribe to join them, and the scientists and Native Americans discussed the issues of the play in a robust, honest talk-back after. I’d already gone home by then, but several people from both groups wrote to me to tell me how exciting and informative it was. The tribe also invited me and the cast to their winter games, and to a traditional Native American meal. Some of the tribe members came to rehearsals – I was incredibly lucky.

The issues of this particular story and this particular court case are really universal amongst the Native population – there’s a cultural divide that takes a lot of effort to bridge before an isolated population can feel confident giving their blood to a stranger from another culture. The members of the Seneca tribe I spoke to were happy that the play gave voice to those issues, and that there was a strong, modern, intelligent Native American woman represented on stage. I was on the panel of the University of Rochester Ethics Conference, and had the chance to talk with the scientists there about their response to the play – some of what I’ve rewritten for this production came from those conversations. In Cleveland it was featured in a panel discussion at the Summa Health Systems Humanism and the Healing Arts Multidisciplinary Conference. It’s already being taught at several medical schools and bioethics classes, which thrills me. I’ll be skyping in with a bioethics class at Case Western Reserve University this week. I’m hoping there will be more and more interest in the medical/scientific community with this production. It seems to be a powerful teaching tool, giving human faces to otherwise theoretical ideas.

The impact inherited genetic predispositions can have on the next generation was very much in the news recently when Angelina Jolie wrote an op-ed in The New York Times about her surgery to remove her ovaries. For ovarian and breast cancer, as Jolie explains, there are many treatment options. For a predisposition to Alzheimer’s, which is the situation with Jillian and her daughter, the treatment options, if any, have yet to be defined. Jillian’s desire to research Alzheimer’s drives her character. Why did you choose to make this aspect of medicine and science such a focal point of the play?

My teacher, Marsha Norman, says – when you’re stuck, write about the thing that terrifies you most. Alzheimer’s terrifies me most. My grandmother, one of the funniest, brightest, most vibrant people I’ve ever known, died of it. I watched it rob her of almost everything. So it always looms large for me as a possible genetic inheritance.

You mentioned before that Informed Consent makes the point that race is not coded anywhere in our genes but is rather the result of migratory patterns. And in your stage directions you write “All racial assumptions should be defied in casting.” So is the play as much about race as it is about science?

I was fascinated to learn that there are no genetic markers for race – that’s it’s entirely a sociological construct. No matter how we try to combat it, we live in a society that makes huge assumptions based on what we perceive as “race.” I want to cast, not color-blind, but actually challenging some of those assumptions about what someone should look like when they speak about certain things. I’d like an audience to have an added awareness, throughout the play, that – Oh! I did have preconceived notions in ways I’ve never recognized.

The play asks the question: “what is that thing, that .1%, that makes you different than anyone else?”  Is there an answer to this question?

That is truly what the play explores. What makes you, you? Again, questions and thoughts, but no answers.

You’ve written many plays, including the acclaimed and much restaged comedy End Days, which was the featured EST/Sloan Mainstage production in 2009. How does Informed Consent differ from your other plays?

They’re all so different, I think.  I’ve wanted form to mirror content as much as possible in this play – there is essentially a tribe of storytellers, helping the main character relate her story. And each of them, at varying times, would like to shift the focus to tell his own story. There’s a tension in the play itself about whose story it is and who gets to tell a story, which is exciting to me. Also, having that kind of chorus has let me play with musicality, layers, and rhythm in a way I haven’t before – I’ve loved it.

What’s the hardest part of writing a play about science?

Knowing when to stop the research and write the play!

What’s next for Deb Laufer?

I’ve just begun a commission for Cincinnati Playhouse in the Park, where my play Leveling Up premiered. It will be a WILD COMEDY. I’m very ready to get back to lots of laughter. It deals with neurology. A depressed, pessimistic misanthrope begins having seizures, which are filling her with hope and light and a love of life. When she learns that it’s a brain tumor, she has to decide whether to have it removed and live, or live the short time she has with this new-found ecstasy. I know, it sounds dark but it will be WILDLY FUNNY. I hope. And I’ve written a pilot and I’m starting a web series. And still have three musicals I need to finish. Jeez, I should be working!

Performances of Informed Consent begin August 4. Click here to purchase tickets.

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