Month: July 2015

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.

(more…)

Advertisements