Books & Arts | Published:

Genomics: Bioethics on stage

Nature volume 524, page 289 (20 August 2015) | Download Citation

Brendan Maher reviews a play inspired by a famous clash between geneticists and a Native American tribe.

Informed Consent

By

 The Duke on 42nd Street, New York City.  Until 13 September.

In the early 1990s, researchers at Arizona State University (ASU) in Tempe collected blood samples from the Havasupai people, an isolated Native American tribe living in the Grand Canyon. A decade later, tribe members sued the university for misusing the samples, on the grounds that they had not been fully informed of the study's scope. The legal battle culminated in a US$700,000 payout from ASU; the remaining samples were returned.

That much is true. But much else about the story is disputed. It has surfaced in articles and books as an example of the cultural sensitivities that come up in research. Some argue that it has become a fable of arrogant scientists riding roughshod over people's rights — a tale that has hardened mistrust between researchers and Native American groups.

DeLanna Studi (left) and Tina Benko in Informed Consent. Image: James Leynse

The latest retelling is the drama Informed Consent, playing at the Duke on 42nd Street in New York City. Seasoned playwright Deborah Laufer sees her work as an exploration of truth and the clash between science and religion. Although the scientist at its centre comes across as a caricature of hubris, the piece effectively presents some ethical, legal and social complexities of modern genomics.

It is highly fictionalized. The real researchers were anthropologist John Martin and geneticist Therese Markow, who in the 1990s were trying to find genetic underpinnings for the Havasupai's high incidence of type 2 diabetes — roughly 55% among women and 38% among men. In the play, Ken (played by Jesse Perez) is a social anthropologist who has worked with an unnamed tribe in the Grand Canyon for 40 years, and Jillian (Tina Benko) is an ambitious genetic anthropologist struggling with the knowledge that she carries a genetic mutation that ensures that she will develop early-onset Alzheimer's disease.

Jillian jumps at Ken's offer to run a study looking for diabetes markers in tribe members' DNA. Soon, she reveals other intentions, such as studying how the tribe came to America — even though this would conflict with their own story about where they came from. Ken emphasizes that this is “strictly” a diabetes study. The fourth wall fading momentarily, Jillian tells the audience that he never said “strictly”. Other cast members jump in to support her version, and Ken revises his line — a playful swipe at the indefinite nature of remembered truth.

Jillian convinces tribe members to hand over samples of their blood — which they deem sacred — by suggesting that DNA tests are their only hope of halting the diabetes epidemic. She also deludes herself into thinking that the work will lead to funding to pursue a cure for Alzheimer's. Her ambition is driven by fear, for herself and for her daughter Natalie (DeLanna Studi), who has a 50% chance of inheriting the mutant gene. In a parallel plot line, Jillian and her husband fight over whether to test Natalie.

The play crescendos as a tribal spokesperson (also played by Studi) confronts Jillian at a talk on the tribe's early migrations out of East Asia, saying that she had no right to use the samples to study this. Under threat of a lawsuit, Jillian's university fires her and the remaining samples are ceremonially returned.

In the mid-2000s, when the real case came to wide attention, progress on techniques for studying DNA was outpacing understanding of how the research might affect participants. There was no clear evidence that Markow or Martin had broken any rules, but the case and others prompted reconsideration of informed-consent documents, which are meant to lay out the risks for participants.

Laufer acknowledges the limits in presenting this story with certainty, especially in an engaging stage play, which Informed Consent most definitely is. She notes: “I guess what happened is much less important than what we can learn from the outcomes.”

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  1. Brendan Maher is a features editor at Nature.

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https://doi.org/10.1038/524289a

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