If a medical researcher had the chance to make a crucial discovery in the fight against a serious disease, is it acceptable to mislead the subjects of her experiment? Seventeen new medical students from the New York University School of Medicine grappled with this question recently as they attended a showing of Informed Consent, an off-Broadway play by Deborah Zoe Laufer running at New York City's Duke Theater through September 13, 2015. As one said after the show, “For me, the play problematized the very notion that consent for human experimentation can be given via signing a piece of paper.”
That the study’s subjects are members of a Native American tribe makes the play’s ethical conundrum even trickier. How should the researcher, named Jillian, approach the tribe? How will the research affect the relationship between the tribe and the local medical center that employs her? And what does it mean for people to sign consent forms they cannot read?
Having watched the show and then participated in a talk back with its artistic director, the NYU students addressed ethical issues that they are sure to confront as future physicians and researchers.
Such early immersion in issues of bioethics and cross-cultural dialogue was hardly always a part of medical school curricula. When I was a student in the 1980s, the first ethics courses were just emerging, largely focused on Tuskegee and other scandals involving doctors and research. There was almost nothing formally taught about interacting with patients from different cultures, even though most of our patients were minorities and immigrants. Even the best meaning of us fell prey to stereotypes and even made disparaging comments.
In the more politically-correct 21st century, such a casual approach to cross-cultural issues is no longer acceptable. There has been considerable press about the use of P.C. language on college campuses, but medical schools have also striven to inculcate students with respect for people from other cultures and provide them with the tools to do so through lectures, small group exercises and role-playing.
But fiction—and drama in particular—offer an especially vivid opportunity to confront our ideologies and biases. In “Informed Consent,” which is based on actual events, Jillian, a genetic anthropologist working at an unnamed medical center in Arizona, is given the chance to work with a local Native American tribe that has a strong hereditary predilection for diabetes. One of Jillian’s colleagues had gotten approval from the tribe, which was highly suspicious of the medical center, through painstaking negotiations with Arella, an educated young woman and tribe member whose trust he had earned over decades.
Yet Jillian has a hidden agenda. She also wants to collect data from the tribe pertaining to early-onset Alzheimer’s disease, which runs in her family and may one day affect her and her daughter. Tribe members who signed consent forms to donate blood at Arella’s insistence believed the research would pertain only to diabetes. But Jillian believed the vaguely-worded forms entitled her to study the “migratory patterns” of the tribe. She ultimately concludes the tribe had migrated from Asia, which directly contradicted the tribe’s ancient belief, which was that it had always lived in the Grand Canyon area.
When Jillian begins lecturing and publishing on her findings, Arella and her fellow tribe members are livid. Ultimately, the medical center forces Jillian to stop disseminating her findings. In the actual case, the Havasupai tribe successfully sued Arizona State University for $700,000 dollars although the researchers maintained they had done nothing wrong.
At the talk back after the play with Andrew Leynse, it was clear that the NYU students, who had attended as part of the school's Master Scholars Program in Humanistic Medicine, had absorbed the play’s basic message that the medical profession should not exploit vulnerable populations for the purposes of obtaining scientific knowledge. Informed consent had not occurred but needed to be a fundamental ethical principle in the world of human experimentation. As Rachel Sarnoff told me afterwards, “I left the play thinking about how much emphasis investigators put on the ends rather than the means of scientific discovery.”
But the students pushed back on Mr. Leynse as well. A couple asked about Ms. Laufer’s decision to write a play about what had occurred, wondering if she was in some way using this story for her own purposes just as Jillian had taken advantage of the tribe. “How did [Ms. Laufer] ensure her actions were different?” asked Forrest Brooks.
Mr. Leynse replied that the creative team had been careful to cast a Cherokee woman, Delanna Studi, in the role of Arella. And as the play was being developed, the cast had performed the show for Native American audiences and had talk backs similar to the one that we were having.
Another student, Babajide Olowadare, who had himself worked in a laboratory and sought consent from subjects, argued that Jillian was not an “evil scientist” but a “human being trying to do her best with what she knows and the external pressure she faces.” Mr. Olowadare said he did not agree with what Jillian had done but understood her choices.
Informed Consent generates many more questions than answers. But they are the exact questions that today’s medical students should be asking.
