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  • Stories in and outside DNA: Deborah Zoe Laufer’s Informed Consent
  • Yuko Kurahashi (bio)

IN THE SPRING OF 2014 I had an opportunity to attend a performance of Deborah Zoe Laufer’s Informed Consent at the New Ground Festival. Coproduced by Geva Theater Center in Rochester, New York, and Cleveland Play House, and directed by Sean Daniels, this ninety-minute play (without an intermission) captivated the audience with its fast-paced, seamless presentation.1 In August 2015 it was staged at Primary Stages in New York City with a revised script.2

Informed Consent (2014) takes the audience to the heart of an ethical controversy between Indigenous cultural values and modern scientific research conducted by scientists at Arizona State University in the 1990s that led to a suit against the school by the Havasupai tribe. In the play Laufer creates a fictional character, the scientist Jillian, who uses blood samples collected from the Havasupai in ways that clash with the tribe’s beliefs, rights, and dignity. When Laufer, a non–Native American playwright, read about the court case in the New York Times, she became interested in “the tidal changes that our growing understanding of the genome” would bring about. At the same time, Laufer recognized in the court case “new ethical dilemmas and questions” and “conflicts” between one’s knowledge and other people’s rights.3 I found the work extremely moving. I was impressed with the way the director presented, with scenery and lighting, the history of the Havasupai who became, without their consent, the object of genetic research that violated their tribal beliefs. Although the work explores contemporary DNA research and the tribal traditions and beliefs that were ignored, I was touched by another thread of the play, the researcher Jillian’s efforts to do the “right” thing for her family even at the cost of violating the law and medical and scientific ethics. Informed Consent also underscores the importance of our stories and their importance even in scientific investigation. In this article I will provide a historical context for the play to assess the value and importance of Informed Consent as artistic and cultural material that questions issues of ethics in genomic research and the cultural identity of Indigenous communities. [End Page 116]

Arizona State University’s Genetic Research Project

Arizona State University’s genome research on the Havasupai tribe members could be considered as part of the study of “Native American DNA,” in which anthropologists and scientists beginning in the 1960s sought to apply “new biochemical techniques” to understand “ancient human migrations and the biological and cultural relationships” of native populations.4 For example, the Human Genome Diversity Project launched by scientists at Stanford University in collaboration with other global institutions sought to record the genetic profiles of Indigenous populations and “build up a picture of how different human populations are related to each other.”5 However, this project’s “large-scale collection of the blood of Native peoples” and the “standard procedures for the procurement and disposition of blood samples from indigenous peoples”6 came under scrutiny.

The real-life case Laufer alludes to in Informed Consent is a project run by geneticists at Arizona State University. The goal of this project was supposed to be different from that of the Human Genome Diversity Project. In the early 1990s members of a tribe called the Havasupai, who live in the Grand Canyon area of Arizona, gave blood samples to geneticists at ASU with the hope of providing genetic clues to the tribe’s devastating rate of diabetes. The project was led by Therese Markow, who ran a series of tests on the blood which was collected, with the help of her then colleague, the social anthropologist John Martin. Because the tribe trusted Martin, who had built a strong relationship with the tribe for more than forty years, they willingly gave their blood samples.7

The problem became clear when the tribe learned that without their knowledge or consent the blood samples had been used for other DNA-based studies, including studies of population inbreeding, schizophrenia, and ethnic migration, all of which are “highly charged topics that are taboo in the Havasupai culture.”8 In...

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