A Review of “Informed Consent” | A Play Regarding the DNA Tests and Lawsuits of the Havasupai Indians

Informed ConsentInformed Consent, written by Deborah Zoe Laufer and directed by Sean Daniels, aims to show the emotional, psychological, and physical dangers that can occur when researchers fail to communicate adequately with their subjects. The play focuses on the tale of the Havasupai tribe and their battle against the improper use of their blood in genetics research. Laufer has stated she was inspired to chronicle their story after reading a New York Times article from 2010 entitled, “Where’d You Go with My DNA?”1 The article summarizes the plight of the Havasupai, a Native American tribe plagued with type II diabetes mellitus. The tribe looked to researchers at Arizona State University to study blood samples of tribal members in an attempt to find a genetic link for the disease. Of note, is that blood is sacred to the Havasupai and they will not proceed to their desired after life without their blood. Though they believed to only consenting to diabetes research, the informed consent document was “intentionally vague” and researchers decided to use the blood sample for more studies than diabetes, without re-informing the Havasupai. It is this story that lead Laufer to her play, Informed Consent.  Though inspired by true events, Laufer chose to fictionalize many aspects, while maintaining the central issue: What constitutes informed consent? On March 18th, the play made its world premiere at the Geva Theatre in Rochester, New York and will be playing through to April 13th. It will be then featured in the Cleveland Playhouse in Cleveland, Ohio from April 23rd until May 18th.

This character driven play features five actors, each jumping into different roles throughout the show. Their impeccable performance is matched by a beautifully rendered set design. Created primarily of cardboard, the set aims to depict the base of the Grand Canyon−the home of the Havasupai. In contrast to the sand colored canyon, there are white rectangles scattered throughout the set, juxtaposing nature with the sterility of the science research lab.  While the actors’ performances are strong in conveying the strife endured by the Havasupai, there are occasional parts that take away from the brevity of the content. This is seen with random background interjections from actors not involved in certain scenes. It seems as though Laufer attempts to add comic relief to the script; however, it is misplaced and hardly receives any laughs from the audience. Lightheartedness is out of place when addressing such a sensitive topic based on true events.

Of note is the lead female protagonist, Gillian, who conducts the research with the Havasupai. It is because of her ill-guided decision to use the blood obtained from the Havasupai for more than diabetes research, which is all that the tribe agreed to, that she inflicts pain on a tradition-dependent group. She is painted as self-centered and career driven, allowing nothing to stand in her way to get publications in lofty journals such as Nature and Cell. She goes so far as to publicly deny the creation story of the Havasupai, which the tribe has passed down for hundreds of year.

While some may think Gillian is over caricaturized, it is easy to see parallels in the everyday medical world. It’s the doctor who asks for a urine sample without telling the patient what he is testing for. It’s oversimplifying or leaving out details because a doctor thinks it is “best for the patient.”  I even saw this in myself on the night of the show. After the play, there was a “talk-back” session featuring the director, a clinical geneticist, and a Native American man, not from the Havasupai tribe. When asked about DNA, the Native American man stated that he was “skeptical” of DNA and that he did not place much trust in its usage. I nearly jumped out of my chair. How could one not “believe” in something with such tangible proof? In that instant, I was Gillian, the overzealous scientist with tunnel vision whose sole perspective is scientific. Though momentarily shocked, I was pleased with this experience for play aims to make individuals realize the importance of respecting differences in opinions and beliefs. It will be through the understanding of patients’ perspectives throughout our careers as physicians that we will gain insight into their lives and, hopefully, provide them with the best personalized care we can offer.

Featured photo courtesy of Moyan Brenn

Leah Dauphin

Leah Dauphin is currently a first year medical student at the University of Rochester School of Medicine and Dentistry. She is originally from St. Louis, Missouri, where she also participates in breast cancer research at Siteman Cancer Center. She received a Bachelor of Arts from the University of Rochester in Spanish with a minor in Public Health. She enjoys reading, kickboxing, and walking her dog in her free time. She hopes to pursue a career in surgery, with a focus in oncology.

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