Informed Consent – Morality Vs. Science

This is an important play inspired by a true incident. Don’t stop reading. It’s as entertaining as it is provocative, smart, but accessible. Issues proffered include some of the most contentious with which we’re grappling today. “Are you the person you see when you look in the mirror?  Are you your job?  What you create?  What you destroy? Are you your genome? Or are you your memories? And when your memory fades… who are you then?” (Jillian)

Author Deborah Zoe Laufer tackles violated rights rarely addressed. How much of who we are rests in cultural history? What happens when decades of tradition are damaged in the name of science whose best defense is the broader welfare? How much of who we are rests in our DNA? Is the government entitled to that uber-confidential information in the name of societal health, safety? This story involves identity and boundaries: the rape or physical loss of memories, genomic study that might one day define us, and the intimate question-would you want to know for yourself, your spouse, your child – if disease was inevitable?

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In 1989, researchers at Arizona State University began a study of hereditary Type II Diabetes among the small, impoverished Havasupai Indian tribe settled for decades in an isolated area of The Grand Canyon. The project was helmed by genetic anthropologist Therese Ann Markow, here called Jillian (Tina Benko), whose department head is a cultural anthropologist named Ken (the engagingly sincere Jesse J. Perez).

Though the fields are often antagonistic, Ken is supportive. Thirty years invested in a relationship with the tribe make him understandably circumspect, however, while Jillian just wants to get out there. The school’s Dean is played by Myra Lucretia Taylor. (Both Perez and Taylor do double duty as over-invested moms. Perez is enchanting.)

The Havasupai were convinced, despite tradition that blood was sacred, to allow a team from the university to take samples. (Here this is facilitated, against her better judgment, by tribe member Arella – Delanna Studi – who has matriculated at college and returned.) Markow had her subjects sign an ambiguous consent form referring to study of “behavioral and medical disorders.” (Jillian insists rudimentary English necessitated simplicity.) Apparently existing legal protections are designed for risky drug trials, not mining DNA.

After several years without finding a link to the illness, Markow used the blood for research into areas which went against cultural beliefs, challenged political sovereignty, and constituted tribal taboo. In March 2003, the Havasupai learned what had happened at one of Markow’s many lectures on findings. They filed a lawsuit citing lack of informed consent, violation of civil rights and medical confidentiality, as well as stigmatization (the risk of identifying individuals).

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The University spent $1.7 million dollars countering and eventually agreed to pay $700,000 to 41 tribe members as well as returning extant blood. (Here, that blood has been sent all over the country.) This was the first recorded payment to individuals testifying DNA was misused, but will certainly not be the last. A “banishment order” was issued by the tribe to keep state university employees from returning.

Markow defended her actions as ethical to the last. She insisted it was the nature of genetic research to make progress from tests unrelated to a unique disease. Many scientists side with moral right to unhampered medical analysis. If DNA is volunteered for one illness, can it be used to study another without permission? Where are lines drawn? How private are data bases?

Laufer’s dramatization makes the incident personal. She gives Jillian a mother who died of an inheritable disease whose genes both she and her daughter might possess; a husband who doesn’t want to know (the completely sympathetic Pun Bandhu as Graham)- protesting by the time their four-year-old comes of age there may be a cure; and a representative of the tribal council who has her own daughter to protect. Indian heritage is illuminated and respected. This is not a dry story.

Tina Benko (Jillian) is terrific. Terminology comes tripingly off the tongue, passion rises from her gut, blinders appear unwitting. Early indications of a life changing disease is palpably horrible to accept/manage which is to say beautifully manifest.

Delanna Studi (Arella) projects just the right balance of strength, lifelong bitterness, and hope against hope. Her turn as Jillian’s daughter Natalie is less successful.

Jim Wilson NY Times

A massive projection of the canyon works wonderfully with four, grey, spiral staircases for climbing, descent, and use when the cast embodies an ersatz Greek chorus. Other projections, including an expanding pool of projected blood, are eloquently illustrative. 20’x16’ of cardboard file boxes create an inspired back wall. Set Design-Wilson Chin; Projection Design-Jeanette Oi-Suk Yew.

Director Liesel Tommy utilizes available stage levels with finesse and her actors with credible naturalness. Jillian’s lectures to us, her audience, are convincing – especially one that’s interrupted. The character’s internal reckoning is evidenced with behavioral changes. Pacing is excellent; attention riveted throughout.

Photos by James Leynse
Opening Left to Right: Jesse J. Perez, Delanna Studi, Tina Benko, Myra Lucretia Taylor,Pun Bandhu
2. Pun Bandhu & Tina Berko; Delanna Studi & Tina Berko
3. Tina Berko & Delanna Studi
4. Tina Berko, Myra Lucretia Taylor, Jesse J. Perez
5. Myra Lucretia Taylor & Tina Berko; Jesse J. Perez
6. The actual tribal council notice-Photo courtesy of Jim Wilson

Primary Stages/Ensemble Studio Theatre presents
Informed Consent by Deborah Zoe Laufer
Directed by Liesl Tommy
The Duke Theater
229 West 42nd Street
Through September 13, 2015

About Alix Cohen (939 Articles)
Alix Cohen is the recipient of eight New York Press Club Awards for work published on this venue. Her writing history began with poetry, segued into lyrics and took a commercial detour while holding executive positions in product development, merchandising, and design. A cultural sponge, she now turns her diverse personal and professional background to authoring pieces about culture/the arts with particular interest in artists/performers and entrepreneurs. Theater, music, art/design are lifelong areas of study and passion. She is a voting member of Drama Desk and Drama League. Alix’s professional experience in women’s fashion fuels writing in that area. Besides Woman Around Town, the journalist writes for Cabaret Scenes, Broadway World, and Theater Pizzazz. Additional pieces have been published by The New York Post, The National Observer’s Playground Magazine, Pasadena Magazine, Times Square Chronicles, and ifashionnetwork. She lives in Manhattan. Of course.