Playwright Deborah Zoe Laufer wants to know the answers to the ethical and religious questions raised by new scientific and medical discoveries.
“I’m just interested in whatever the latest breakthroughs are and genomic research is just moving forward exponentially," she says. "It raises new questions that we’ve never had to answer before. You know, our parents never had to decide what they wanted to know about their body structure, about their future, about their past. And also what they wanted to know about their children and how much they want to know before they have children."
Her new off Broadway play, “Informed Consent” takes as its inspiration a real court case, in which the Native American Havasupai tribe sued researchers from Arizona State University after those researchers conducted unauthorized studies using Havasupai blood samples. The researchers had attempted to unlock the secret of the tribe’s high rate of diabetes. What the tribe members didn’t know is that the researchers were also looking for other kinds of information having to do with mental health and their tribe’s origins. The court battle that followed transformed medical ethics.
“The tribe's creation story is that they sprang forth from the Grand Canyon, and they believe their blood is sacred. They’ve never given it for any other kind of research. But their rate of diabetes is so dire — it’s 50 percent of the tribe, and there’s less than 700 of them left, so they were in such a terrible situation that they were forced to turn for medical help,” Laufer says. “What the researchers found is that the tribe originated in Eastern Asia, and so that contradicted their creation story. And that’s what fascinates me — where science and religion sort of rub up against each other uncomfortably.”
As part of her research for the play, Laufer went to visit the Havasupai tribe in Arizona. She found that the unauthorized research had destroyed an important part of their identity.
“We’re all just trying to figure out how to make it through the day, how to deal with our own mortality and why we’re here, and so I’m just fascinated by what people choose to believe in order to answer the big questions for themselves. And science, for me, answers those questions — or asks more questions. It’s where I go to sort of find wonder and awe. But I would never want anyone who has a belief in the afterlife or any sort of higher power to have that taken away. Because that’s a source of great comfort too. I’d love to write about a place where both points of view can be respected but there’s always tremendous tension, and push and pull there,” Laufer says.
Laufer’s play has not only had a successful off Broadway run, it’s also been used as a teaching tool at medical schools as a part of medical ethics courses.
“I think they discovered the same sort of thing I discovered when I went down and met the tribe ... that it’s all very well and good to understand what informed consent is in an intellectual way. But when you put a face on it and understand the actual personal implications, it really changes the way you think about it,” Laufer says.
When it comes to Laufer’s own understanding of what constitutes informed consent in regards to DNA research, she thinks a truly ethical agreement is a continual back-and-forth between researchers and subjects.
“You can’t fully represent what could be looked for in a DNA sample, but if you want to keep looking further, what you need to do is come back and get permission. You have to ask for informed consent. So it’s not just a piece of paper, it’s a living document and a living contract between people,” Laufer says.
Laufer’s next play is a comedy about brain tumors, neurology and the ecstatic religious experiences people sometimes have in connection with epilepsy or a tumor. She hopes it too will ignite discussion, laughter and maybe even a few debates — just as “Informed Consent” has.
“People who’ve come see the play — we’ve had couples come see it who thought they knew where they stood on getting their children tested or getting tested themselves and then they have arguments after the play. And so if I can make people argue with each other, I feel like I’ve done a good thing,” she says.
This article is based on an interview that aired on PRI's Science Friday with Ira Flatow
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