“Consent as a Process, Ferocious Storytelling, and Teach Backs” Dr. Rhonda Kost and Dr. Barry Coller Join Deb Laufer and the Cast and Talk to the Audience about INFORMED CONSENT

Rhonda Kost Barry Coller Deb Laufer.JPG

Following the August 27th performance of INFORMED CONSENT at The Duke on 42nd Street, Dr. Rhonda Kost, Director of Clinical Research Support, Rockefeller University, and Dr. Barry S. Coller, David Rockefeller Professor of Medicine and Physician-in Chief, Rockefeller University Hospital, joined playwright Deborah Zoe Laufer and members of the cast to discuss some of the issues the play raises with the audience. Dr. Coller kindly took the place of Dr. Sarah Schlesinger who was unable to attend. Primary Stages Associate Artistic Director Michelle Bossy moderated the discussion and began by asking Dr. Kost and Coller what aspects of the play rang true with their experiences.

Dr. Rhonda Kost: Most of us who think about human protection, of which informed consent is the centerpiece, have heard about the true incident on which the play is based.  It really highlights the importance of understanding the cultural and linguistic context when you speak to people about informed consent. Personally, when I’m taking informed consent or teaching informed consent, I never try to persuade anyone to do anything. In fact, I almost do the opposite to make sure that the person understands what they’re signing up for before they participate in research. There’s always potentially a problem because what I think is very clear in my language may still mean something different to you and so we undertake things like – you call this a talkback – well, we have a Teach Back where we ask people to explain back in their own words what they are consenting to. We really try to teach and support transparency.

Dr. Barry S. Coller: First of all, we have a group of people from Rockefeller here tonight, our physician scientists and members of the staff who live this every day. This is not new to us. What has changed and what we’ve spent a lot of time discussing for the last two years are the challenges associated with whole genome assessments. Because there is the potential for people to learn things that are not the actual reasons why the study was done. And then you have the challenge of what to do with that information. And we have literally worked through documents for the research participants and documents for the investigators to help them to get through that process so that you have informed consent at the end. What rang true to me in tonight’s play was that moment when the scientist said “it would take forever to get someone to really understand this.” And that is one of the big challenges. Because some of the downstream possibilities are complicated to understand. They require more than a casual understanding of genetics and more than a casual understanding of disease. Those are the things that were beautifully portrayed in the play. And why theater is so great in helping people understand issues that in fact we do face every day.

Michelle Bossy: Thank you. In fact, Deb mentioned in last week’s talkback that her play is now being taught in some medical schools. Deb, could you tell us something about where the idea for the play came from?

Deb Laufer: The play was inspired by a New York Times article about the Havasupai case. I’m interested in belief systems and why people believe what they believe. Where science and religion rub up against each other uncomfortably is a subject that interests me. That was the jumping off point.

I will tell one story. The play had an earlier production in Cleveland. I went to Case Western where there was a medical ethics class of mostly pre-med students. They studied the play as one of six documents and the discussion about the play was the last class after an entire semester of discussion of all kinds of things. We were talking about respect and how much it takes to understand another culture. There was a guy who was pre-med who said, “Why do I need to respect someone who believes the world is only six thousand years old?” And everyone jumped on him, trying to find the right words and this one woman spoke up who said, “I’m actually one of those people who believes the world is six thousand years old. And I’m here in med school and every day I have to weigh what I’ve been taught by my family all my life and believe and which gets me up in the morning with purpose and meaning – and weigh that against what I’m learning in med school and what I need to bring to my scientific training. Your intolerance all semester has been really painful to me.” And it was a discussion that had never happened before. It opened up a conversation. That was one of the thrills of writing this play. That conversation happened among people who are going to be dealing with this subject and hopefully they came away from the discussion knowing more than they previously did.

Question from the audience: Deb, what interactions did you have with the Havasupai?

Deb Laufer: I went down and spent a night at the tribe’s lodge with the tribe. They have a 24-room lodge. Going down there I could see just how dire their circumstances are. They have so little means of making any kind of living there. Their land was taken and their water rights were taken away. So they couldn’t even have cattle for many years. So this 24-room lodge and the helicopter that brings people in is their source of making a living of their own. So they are not happy to be doing that. And I felt that very strongly while I was down there. And it really impacted how I rewrote the play.

Question from the audience: I’m interested in knowing how the actors consciously balanced the enormous opportunity that Ms. Benko as Jillian was so passionate about – the chance to cure diabetes and extend life – with the risk that you show?

Tina Benko: Well, what’s incredible to begin with is performing with this beautiful woman. DeLanna is here representing Cherokee Nation. When she speaks to me about being an indigenous person – that is coming from every fiber of her being. It’s an undeniable energy. An undeniable sense of her origin, of what the white man has taken away. Deb is very wise to create the high stakes of having Jillian suffer from Alzheimer’s. The ticking of that clock ratchets up the stakes even further. But DeLanna can probably speak to your question as well.

DeLanna Studi: We were very lucky to have Liesl Tommy as our director. Liesl is about ferocious storytelling. It wasn’t uncommon for us to go home in tears after rehearsal. I remember my homework one night was “What does hopelessness look like?” It’s not a pleasant place. As a Native actor, it’s not uncommon for me to be the only one of my kind in the room. And that can be very scary. The cast made it very safe for me. I didn’t know anything about the Havasupai. I know about my tribe. My father was sent to boarding school where he had the Indian beaten out of him. We’re very protective of our culture. Science may contradict our beliefs but they’re all we have and we’re not going to have them taken away again. Deb was not afraid to discuss these issues and she wasn’t afraid to write about them. And it’s hard to hear, especially if you’re the dominant culture. As a Native woman, I don’t get a chance to play a role like this often. I’m usually in the background. And it’s the first time I get to play someone who reminds me of my aunties and my grandma. I never get to see them as the strong women that they are. To be able to come on stage and play a role in which I feel I’m not sacrificing my culture or my gender. That’s a huge step for me.   

Question from the audience: Could the objective of Jillian and the Havasupai have been reconciled with the proper consent approaches?

[Long pause before someone answers]

Dr. Barry Coller: Sure. [laughter] What you saw was that they signed the form but that’s not really what informed consent is about. Dr. Kost can tell you because she has sampled almost 5,000 people who have participated in studies. Most of the time people think they’ve been prepared properly by the consent process. I think we have improved dramatically. But consent is not signing a form. It’s having a discussion and understanding to the best of your ability what you’re actually going to do when you’re part of the study.

Dr. Rhonda Kost: It’s always troubled me that up until recently that consent had been measured by what the people who designed the consent consider adequate consent. Do we think the language is good enough? Have we included all the elements that Federal Law says we have to include?  But there was very little from the participant side saying “so, how’d that go for you?” Granted, this is retrospective, but my work has been on collecting information in order to improve consent based on what people say having been through a consent experience and a research experience. “Now that you’re in the middle of it, how are things going? Do they actually reflect what was explained to you? If not, what’s wrong?” And using that information to go back iteratively and try to improve the process. A lot of people have tried a lot of different things to improve consent. And it’s remained somewhat elusive how to make sure everyone fully understands what they’re signing up for. As Dr. Coller says, it’s a process. The process up to the point of signing is not the end of the process. Through the entire course of research, engaged consent means asking continuously do you understand what’s happening. Do you still agree?

There are two more scheduled talkbacks happening after the remaining Thursday evening performances. 

The Off-Broadway Premiere at The Duke on 42nd Street of INFORMED CONSENT by Deborah Zoe Laufer is being co-produced by Primary Stages and The Ensemble Studio Theatre through EST's partnership with the Alfred P. Sloan Foundation.