Lovely Van Ride and Fancy Coffee Machine
Pre-workshop Mix and Mingle
Introduction and Welcome
We received a warm and enthusiastic welcome from both Dr. Eric Green, the Director of the National Human Genome Research Institute, and Karen Rothenberg, J.D., M.P.A., the Senior Advisor on Genomics and Society to the Director, National Human Genome Research Institute. Karen reiterate our reason for coming together:
"The purpose of this workshop is to generate dialogue about the intersection of science and the theatrical arts among participants with interest and expertise in science, medicine, bioethics, policy, education and the theatrical arts. The workshop will also seek to stimulate a community of playwrights and theatre professionals interested in engaging with scientists to encourage public discourse on issues related to biomedical research and genomics."
As part of preparation, Karen shared a chapter from her book, The Drama of DNA: Narrative Genomics, which she co-authored with Lynn Bush. As with this workshop, the book explores the intersection of drama, genetics, genomics and bioethics.
Panel 1: Uncovering the Drama in Science
Karen asked each of the playwrights to speak about what had inspired their plays and how they went about the process of learning the science.
Panel 2: Real‐life Drama and the Future of Genomics
As the scientists shared some of their most intriguing case studies, I sat with my mouth agape. They were mindful and obliged to keep patient confidentiality, but shared enough about psychological conditions and medical circumstances for us to understand the ethical dilemmas that many scientists and clinicians face. I couldn't take notes fast enough and saw the my theatre colleagues were deeply affected as well.
Selfishly, I decided to take art in this workshop because my new play, Among These Wild Things, addresses science, religion, and art. The lead character, Jesse Lee, is agnostic and a geneticist, whose research is centered on identity, race and genetic variation. She’s married to Nigel, an art historian, who recommits to his Jewish faith after the loss of his grandfather. Once he does, their marriage is put to the test. I knew this workshop would help me understand Jesse's world better and I'm thrilled to announce that I'll working with Vence Bonham to learn even more.
- Part of the allure of science has to do with discovery, seeing something for the first time, something that has never before been seen.
- Also, being able to see something so small or far away, and even extend your power of sight into even the future of things that will happen.
- Working with patients, there is a strong desire to understand what is happening with their health. The unknown is frightening. Patients lose credibility with family, friends, colleagues, and other doctors when they are unable to identify their illness.
- Equally, they are many who simply do not want to know what is happening to them. At times, this can cause an ethical dilemma. If a family member has a genetic illness, but does not want to know or chooses not to tell anyone else in their family, geneticists have to decide whether or not to intervene, and how to do so ethically.
- It was also interesting to learn that many cultural, family, and religious beliefs are often barriers to understanding the root cause of an illness. If people believe that illness is caused not by genetics, but by sinful behavior, then geneticists have to determine how to establish credibility against such deeply firm beliefs and traditions and share information that may be life saving.
Discussion: Fostering a Dialogue between the Arts and Sciences
We talked about possible commissions and ways that scientists could participate in community engagement initiatives related to productions. We shared how working with scientists early in the writing and rehearsal process was beneficial to theatre artists. Someone suggested possible embedded residencies in science labs or observing clinician during consultations. We even addressed the need to make room for conflict. Meaning, while the artists could certainly help get information out to the public about new discoveries and advances, there must also be room to dramatize the emotional and ethical push back. While organizationally this may prove challenging (and would in any discipline), therein lies the drama of the human condition that we're all interested in exploring.
All in all, it was a worthwhile and invigorating experience. I was delighted to learn that this would be the first of many collaborations. Theatre has a long history of addressing social, political, and cultural issues. The sciences—especially the intricate, rich, deeply personal, and ethical complexities of genomics and genetics—have an enormous impact our everyday lives. When theatre artists and scientists work together, we can open up, clarify, and engage with scientific literacy, which may not be understood by society at large. Doing so will not only break down the barriers that often exist between scientists and the public, but also encourage learning and curiosity. It is the hope of many in the room that by having a greater understanding of the role and impact of genomics on human biology, we can improve our health and medical practices.
"The discussion overall was really intriguing; but what captured my interest was a statement made by William Gahl, who is also the Director of Undiagnosed Diseases at NIH. He said that a patient without a diagnosis has no credibility -- not only with coworkers, friends and family, but also with the medical establishment. He told the story of a woman with an undiagnosed ailment that affected her in strange, horrible ways. One weekend she stubbed her toe. Because of her condition this minor accident led to fatal consequences. She called her primary care doctor on a Saturday to report the problem, and he essentially said "take two aspirin and call me on Monday." By Monday she was septic, and she died.
It hit me that this lack of credibility she suffered was also with herself--because she didn't reject the doctor's counsel and go straight to the emergency room. Even though her experience to that point would have suggested she probably should have. She tried self-care, which was a fatal error.
And it strike me now how badly we need answers in this culture. When we don't have them, we when can't find them in medicine, we categorize the sick person as a crank, a crazy, a hypochondriac. But in reality, modern medicine is often at a loss -- there are strange conditions and ailments that affect people, and there are no answers. No one can figure it out. And it's a great tragedy that so many people have to suffer needlessly in order for the rest of us to maintain what is really a self-delusion---that there are always answers to be had. That science has everything under control.
The Drama of DNA: Genomics in Performance
“Spending the morning at the NIH speaking with some of the world’s leading scientific minds; and then the afternoon rehearsing these wonderfully detailed and layered scenes (with the gift of having the playwrights in the room) was an honor and a treat," Serostky said. "My father has been a science educator for over forty years. The passion he has for science in no small way inspired the passion I have for theater. These two communities can intersect and overlap in meaningful and productive ways.”
Please enjoy these lovely photos from the event: