“Good Science, Genetic Testing and Blood Journeys” Dr. Tia Powell and Video Journalist Kassie Bracken Join Deb Laufer and the Cast to Talk to the Audience about INFORMED CONSENT

Following the September 10th performance of INFORMED CONSENT at The Duke on 42nd Street, Dr. Tia Powell, Director, Montefiore Einstein Center for Bioethics and Einstein Cardozo Master of Science in Bioethics, and New York Times video journalist Kassie Bracken joined playwright Deborah Zoe Laufer and members of the cast to discuss some of the issues the play raises with the audience. Primary Stages Artistic Director Andrew Leynse moderated the discussion and began by asking bioethicist Dr. Powell what “informed consent” means to her.

Dr. Tia Powell: There’s a very standard phrase that no rule or law was ever made that wasn’t first broken. That is absolutely true when it comes to the way we regulate these cases. We have rules in place about getting consent, about working with people to make sure they understand what’s happening in the research. Those rules that have been implemented are a work in progress. Things are much better than they were when the regulations started.  It was only in the 1970s that we got serious about regulating research. Still errors are made like the one that’s described so movingly in the play. The play is wonderful in its evocative nature. I love to use literature in teaching. Theater does things very powerfully that can’t be done by other things. We use articles from the journal. We use legal cases. We use lots of things. They are all important. Using arts is particularly important because it speaks directly to the heart, to the moral distress and the emotional component.

Andrew Leynse: Kassie, you were the videographer on “Blood Journey,” the very moving video you created for The New York Times about the Havasupai. What echoes from your experience did you find in the play?

Kassie Bracken: There is a line in the play that I recognize as a quote from the scientist. “I did good science.” It was an interesting line to explore. I was there with the Havasupai tribe for three days prior to when they went to retrieve their blood. This brought back a lot of memories. It’s been five years. Most memorable was that last moment when the elders and the woman on whom I think Arella is based go back and sing this beautiful prayer over the blood. The emotion of that moment is something I’ll never forget.

Andrew Leynse: Let’s talk about that moment. We tried to theatricalize that moment but found that we couldn’t be realistic about it.

Deb Laufer: Right. In the New York Times video that you took, one of the things that made me think I have to write this play is when the tribe came to collect their blood. They were dressed in tribal garb and they were singing a sacred song and they were made to put on gloves, and lab coats and goggles. The metaphor for the whole play was right there before me. Writing this, the whole journey I’ve been fumbling and clumsy through the whole thing and realized that I’ve been stepping on toes all along.

One of the powerful lessons came when I tried to replicate that moment. I wanted to use their song to honor them and do it exactly as they did it. I tried to find that song and I couldn’t find it anywhere. I went to a member of another tribe and asked him, “Why can’t I find that song? I want to make sure I get it right.” And he said, “Don’t use that song.  They would not like that.” So I asked, “What should I do?” And he said “Make up a song.” And I asked “What should I use for words?” And he said “Make up words.” So I said, “Well, I’m Jewish, so if I made up something Yiddishy I would be imposing my culture on theirs.”

It made me realize how much constant going back and asking and asking has to happen before you really understand where another culture is coming from and what’s important to them. I was constantly having that thrown in my face throughout this process. And we realized that putting lab coats and goggles on the tribe didn’t really embrace that moment. It was true to what happened but onstage it was odd and wrong and we stripped that away.

Andrew Leynse: Let’s take questions from the audience.

Comment from the audience: I thought the play was terrific. It raised so many questions. It reminded me of a modern day Enemy of the People. I really liked Jillian. She was going through her ordeal. And the rest of the world was against her. Even her husband. Very moving.

Tina Benko (who plays genetic anthropologist Jillian): I think Deb did an amazing job. You don’t know who to root for. Of course, we all would want to embrace science and finding information and finding a cure. But then respecting someone’s religion belief, creation story, myth, culture, is really important and it mirrors what we’re dealing with now in terms of race and cultural identity – they’re all part of this play. I’m proud to be a part of it.

Question from the audience: As a scientist and actually as a genetic anthropologist now seeing this for the second time, I do worry about the aspect of this play seems to indulge the current anti-science movement. OK, we go against this tribe’s creation myth. But there are hundreds of creation myths. There’s Kim Davis with her internal myth . Do we stop doing science? Global warming. Climate change. Evolution – these go against deep seated beliefs of millions of people. How do we navigate this?

Dr. Tia Powell: We can’t answer this completely because it’s part of our current culture wars. That is the question to ask. How do we partner with communities in a way that’s respectful and yet in a way that allows appropriate things to move forward. Relatively recently there was a geneticist, a very senior person, who complained that bioethicists with all this stuff with consent were gumming up the works. That’s a real thing from a person of power. I think that’s wrong. To ignore the value-laden aspects of science will only swing back around and bite us.

At the same time we know there are families with terrible diseases that we don’t adequately understand. We don’t have a cure for Alzheimer’s. How do you make the public more sensitive? Even educated people don’t have good understanding. I believe we can be respectful of values and culture and also partner with people to say we would like to go forward. One of the issues in the play is that I’m not sure how much benefit there was ever going to be to the tribe by looking at the genetic basis of Type 2 diabetes. The thing you can do to help them right now is to get people to exercise and eat better. It was a very interesting thing that she believes an untruth. It’s important to get that in. Medically, it’s not even correct. Although I’m perfectly willing to believe that the scientist believes in what she’s pursuing. There are faults on either side of the question.

Deb Laufer: I gave my main character a viewpoint. I actually believe this. If everybody took part, if we were all to give our blood, then the genome could be traced so much more quickly. In some ways Jillian does feel that she is saving the world by doing her research. But there are places where you have to be respectful and delicate if you’re going to do that. What do I know? I’m just a playwright. But for scientific research to go forward what we don’t want is to trot on someone’s sacred beliefs. Because that will slow down progress. Pushback is where things are stopped. But if everyone is very respectful then we won’t have that kind of pushback. The lesson to learn is to try to get everyone on the same page.

Question: I have a question about the title Informed Consent.  I’m in between two points of view. One is I felt you showed the dilemmas of informed consent. It would have been potentially difficult for the anthropologist to specify exactly what she was going to ask of the samples. On the other hand, I felt you left the university off very lightly. There are all kinds of committees that go through this informed consent process. I wonder if you meant to imply that these committees left the language deliberately vague. You didn’t really question the whole notion of informed consent. For those of us who have worked overseas, and have worked in different languages, it’s inconceivable that we could arrive at a suitable informed consent or that the people we are asking to sign this thing could know what it meant.

Deb Laufer: Yes, I don’t like the title. It was the title I gave it early on and I thought I would change it

Andrew Leynse: Oh, Deb, come on. Are you going to change the title?

Deb Laufer: I’m not, because I haven’t come up with something better.  [laughter]

Andrew Leynse:  As artistic director of the theater, let me defend the title. Deb, you haven’t told them the whole journey you’ve been on and where you began. She was commissioned to write the play based on it being a landmark case that to this day you need to study to understand informed consent. At the time the action that inspired the play happens those rules were a lot vaguer than they are now. Deb went on a journey. She went to the Grand Canyon. She met the tribe. She climbs back out and writes the play and there have been several different incarnations of it. But what’s fascinating for audiences and what I love here tonight is that you are all excited about this topic and can debate it. I think the reason why it’s received such great critical praise from audiences is that it takes this simple idea of what is informed consent and expands it to that bigger idea of what is identity and role of DNA in it and what does it mean to us.

Deb Laufer:  Thank you, Andrew, for defending me and the title. [laughter] I guess the reason I don’t like the title is because I think the play is about much bigger things and it always diminishes it to simply talk about the court case.  For me that was the jumping off point to talk about identity and other issues. That’s why I’m not wild about the title.

Dr. Tia Powell: I think it’s a very important question. It’s very hard to figure out how to get informed consent right. To your question about genetic testing. Most genetic tests are not black and white. It’s not anything like 100% that you have it or not. Even for tests in which there is a strong genetic component like the BRCA1 gene, there’s about 80% likelihood. We don’t know what other genes you have, we don’t know enough about environmental factors. This is a big issue going forward. People would love to test a lot of people either genetically or in other ways for Alzheimer’s. Almost all of those tests deliver a tiny increase in percentage of likelihood.  It’s not at all clear to me that you can communicate that. It’s a slight oomph in the likelihood. There are a lot of interactions. I think there is a mistaken notion that you could go out get a test like the one described in the play for Alzheimer’s today.

Andrew Leynse:  Kassie, I wonder what if anything you heard about informed consent while you were visiting the Havasupai.

Kassie Bracken: What was very moving to me was the shame that the people in the tribe were still holding . That was palpable twenty years later. . . . I did want to say that when you talk about the broader issues of informed consent. I have done a lot of videos about DNA and other technologies and have witnessed the social ramifications within families.  We did one story about how scientists were able to find these incredibly rare genetic mutations. One family went to meet with the one other family that had the same thing. I was there for that moment and I was reminded of that tonight. I really appreciated the nuanced depiction of the character of Jillian in the play and her relationship with her daughter.

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Question: This case in the mid-1990s was at the cusp of when we were switching from single gene study to having whole genomic data. And so the idea of what studies are even possible with the same material was exponentially changing. The question I posed to my class is: is it even possible to have informed consent if you can’t even imagine what test you might be able to do from that material? You have this data you can analyze it a thousand ways. Can you really limit what you’re going to do with knowledge? I don’t study humans so I’m not an ethicist. But how do you ask someone for consent when you don’t know what tests you’re going to do? And the main problem is that there is zero anonymity. Everyone in the tribe knew who gave their DNA.

Dr. Tia Powell: There is an active debate now on what to do about blanket consent for genetic-based tests.  If you go to any academic hospital in the U.S. for tests you will be given a form that will say something like, “listen, if there are leftovers from your test, we can throw them away, that’s fine, that’s what we usually do, but if it’s OK with you, if there’s a little blood left over from the test or a liver or gall bladder you don’t need any more, we’d like to keep that and we’re going to make it anonymous so we don’t know it’s from you. We’re going to do – actually we don’t know what we’re going to do. Whatever comes up. We think we may want to know how many people in this whole sample have markers for BRCA1 or have a marker for a genetic form for early onset Alzheimer’s.”  

It’s much less identifiable so it will be tens of thousands of people. You will be asked: do you want us to never contact you? You will be asked: What if we found something from a reliable test that you could do something about? Would you want us to contact you then? It’s not like we’ve fixed it and we’re done. We are in an era when these samples could be incredibly helpful. There’s a very active debate at NIH and at academic research centers about should we reach out and contact people again or should they remain anonymous. It’s a very complicated set of issues that are unresolved.

The Off-Broadway Premiere at The Duke on 42nd Street of INFORMED CONSENT by Deborah Zoe Laufer was co-produced by Primary Stages and The Ensemble Studio Theatre through EST's partnership with the Alfred P. Sloan Foundation. New York Times reporter Amy Harmon, who was scheduled to participate in this talkback, was unfortunately called away on assignment at the last minute and had to cancel.