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Genes get personal in Informed Consent
The advance of science often means the recession of mystery. The more we learn about how the world operates, the less we need myths to explain what we can't understand or superstitions to dictate how we behave.
Which is all for the best, right? It's better to know that thunder is caused by storm fronts and not by Zeus. It's better to know that HIV is transmitted through sexual contact and not through shared water fountains.
Then again, there are certain mysteries that may be better unsolved. There are certain questions that, without answers, may actually enrich our lives. But should we answer them anyway?
That conundrum drives Informed Consent, a new play by Deborah Zoe Laufer that's now at the Duke on 42nd Street in a co-production from Primary Stages and Ensemble Studio Theatre/Alfred P. Sloan Foundation Project. Inspired by real-life events, the show asks how far science should probe into our spiritual and emotional existence.
First and foremost, Laufer dramatizes the case of the Havasupai tribe, who successfully sued Arizona State University after a scientist there used tribal blood samples to test for a wide range of illnesses and genetic markers. The tribe members had only consented to have their blood tested with regard to their susceptibility to diabetes, and they certainly weren't okay with testing that proved their ancient ancestors had migrated from Asia. That flouted their long-held belief that they sprang up from the Grand Canyon, where the tribe still lives.
Yet in Laufer's play, the geneticist, called Jillian, refuses to accept that these scientific discoveries are a bad thing. She keeps asserting that it's better to know.
As Laufer explains, "One of the questions the play asks is, 'Now that we can know the story of our past and perhaps the story of our future through our genome… well… who are we?' Are we our stories? Are we our genome? Are we our memories, our tribe, our race? What defines us?"
Despite's Jillian's confidence, however, the play itself doesn't provide firm answers. Ultimately, we're reminded that everyone is faced with a puzzle about themselves that they may not want to solve.
That's partly why Laufer has chosen a non-realistic structure. As Jillian grapples with personal and professional upheaval, four actors play everyone around her, from her husband and daughter to the Native Americans protesting her work. Crucially, all five cast members are of different ethnicities, underscoring how genetic ethics affect us all. "I wanted the form to mirror the content as much as possible, and having a chorus help tell the story seemed to create that balance," Laufer says.
That's also why Jillian herself is faced with a genetic dilemma. She has early-onset Alzheimer's, and she must choose whether or not to test her daughter for the disease's gene. "That's something no other generation has had to grapple with," Laufer says. "What do you get yourself tested for? Do you test your children? Do you test yourself before you have children?"
In other words, do you let the mystery linger and chart your life accordingly, or do you find out for sure?
This isn't just a writerly parallel to the Havasupai case. Laufer's own family has a history of Alzheimer's. "In our family, that's the big question," she says. "Do we have the gene?"
All these issues have guided the development of Informed Consent. "I'm in love with science," Laufer says. "When people say, 'Why are we spending so much money on the space program?' or 'Why are we researching creatures under the ocean?' I always feel like, 'Because we're human! Why wouldn't we want to know whatever we can about the life we have here on earth?!?'"
Then she adds, "And yet have I had my own genome tested? No."
Mark Blankenship is the editor-in-chief of TDF Stages
Photos by James Leynse. Top photo: Delanna Studi and Tina Benko