Informed Consent: When Science is a Morality Play
An interview with Deborah Zoe Laufer
The first part of this story is clear: in 1990 a geneticist at Arizona State University worked with the Havasupai Indians who live in the Grand Canyon see if there was a genetic component to the tribe’s high rates of type 2 diabetes. The next part of the story becomes complex, intertwining science, religion, intention, and permission. The geneticist claimed to have obtained the adequate permissions to use the DNA samples acquired from the tribe not only to look at diabetes connections but also to study mental health biomarkers and the tribe’s geographical origins. The Havasupai Indians argued that they were mislead and had never agreed to any other use of their blood samples besides for diabetes testing. A seven-year court case ensued, ending in 2010, when the case was settled; Arizona State University’s Board of Regents agreed to pay $700,000 to the tribe along with returning all blood samples taken from its members.
This is the story the inspired playwright Deborah Zoe Laufer, who used it as a platform to explore the conflicts that can arise from the collision of science and society in her newest play Informed Consent. Laufer uses a fictitious scenario, very similar to the original Havasupai Indian case, to set into motion an intimate discussion (with only five actors) on how scientific knowledge can open the door for moral and ethical questions, some of which we may not be prepared to deal with.
In the play, Jillian, a genetics researcher starting her career, is brought on to a project that hopes to find if the Havasupai Indians, like Pima Indians, are genetically predisposed to type 2 diabetes. But the story isn’t just about the science or court case (though Laufer takes great pains to include a basic scientific explanation without turning the stage into a lectern). Jillian has a personal investment in genetic testing: her own mother died at a young age from early-onset Alzheimer’s, which makes Jillian, as well as her young daughter, likely candidates for the disease. Though the play, as the title says, focuses on issues of informed consent in scientific studies, that is only one aspect of play; what we do with biomedical knowledge and our responsibility to family members and society is just as important, and an even more emotionally charged aspect of the play.
Sense About Science USA spoke to Laufer about her play, its gestation, the moral and ethical issues raised by the fast pace of genetic research, and how these issues are sometimes best laid out on the stage.
Sense About Science USA: Why was this story interesting and important for you?
Deborah Laufer: One of the best things about being a playwright is that I can choose to write about what I want to learn about. It’s a great luxury to be able to spend a year researching a topic that I find fascinating. I wanted to learn more about the human genome, so when a friend sent me the article about the actual court case, the issues it raised seemed ripe for a play—the cutting edge of scientific research, moral ambiguity, two deeply divergent points of view. And I like to explore that area where science and religion bump up against each other uncomfortably—the tribe’s creation story is that they sprang forth from the Grand Canyon, and the researcher traced their origins to Eastern Asia. That contradiction of their religious beliefs devastated them. It was a clash of cultures that required more than a simple consent form to sort out.
I also wanted to give the scientist a fictional personal story that would allow me to explore some of the issues that our parents and grandparents never had to deal with. Now that we can learn so many things about our past and our future from our genome, what do you want to know about your spouse, about yourself, about your children? Will it determine whether you even have children? What do you and your loved ones deserve not to know?
Also this was a landmark case, which I didn’t fully understand when I first started writing it. It’s being taught in medical schools and ethics classes all over the country. Before this case, informed consent had mainly to do with bodily damage rather than emotional and psychic damage. This case illustrated that informed consent goes two ways. Not only does the researcher need to explain what she’ll be doing with collected samples, she needs to go to great lengths to fully appreciate the concerns of another culture, so that everybody is on the same page about what’s important. Where the boundaries lie.
For a year I studied the tribe, read everything I could about them. Still, when we went into rehearsal in Rochester I realized I’d made enormous assumptions based on my background that would have been offensive to the tribe, well-meaning as I was and with as much research as I had done. For example, I’d tried to find the actual song that the tribe sang when collecting the blood, thinking that would be the most respectful thing to do. I asked a member of another tribe where I might find it. He told me that it would be wrong to use the actual song on stage. That I should make up a song instead. So… you have to ask to know. It’s sort of astonishing when you’re dealing with another culture how much work it takes to fully understand their perspective and honor it.
SAS USA: Did you interview any scientists or the tribe for this play?
DL: It was a commission by the Alfred P. Sloan Foundation so they generally provide scientific feedback. They provide you with a scientist. The friend who sent me the article from the New York Times is a biologist with his own lab at UPenn. He was a fantastic resource. I spent some time in his lab, went to lab meetings, even got to extract DNA from cancer cells. I also went down to the Grand Canyon and spent a night in the lodge that the tribe maintains. No one there wanted to talk about the actual court case, but seeing where they live, visiting the clinic where they gave their blood, were all vitally important in my rewriting the play.
SAS USA: What do you think are the advantages of having this conversation in a play form rather than like you reading it in a newspaper?
DL: From emails I’ve received, I know that this play will be taught in about 20 medical school and bioethics classes this coming year. I visited a bioethics class at Case Western [Medical School] that spent an entire semester studying this case. They read five medical and legal documents and then the play. It brought about a really lively discussion. These were both bio-researchers and medical students. One of the students said why do I need to respect somebody who thinks the world is only six thousand years old? Why do I have to give that any credence at all when it’s not helpful to them getting healthy?
Of course he got tremendous pushback from the class and everyone was trying to explain why he should be respectful. None of which seemed particularly compelling to him.
Then, one girl in the class said, I’m one of those people who believes the Earth is only six thousand years old. I’ve had to bring this belief system I was raised with, that’s brought me tremendous comfort and faith and joy, to this study of science. Every day I have to struggle to hold both viewpoints. The time I’ve spent in class with you, you’ve said things that have been deeply painful to me.
She’d never spoke up before; she’d just endured his comments. That alone made me think that if you can dramatize something in a way where people are actually seen as multi-dimensional, as people rather than statistics, it gives a depth and hopefully a real human face to the conversation that reading dry documents can’t always provide.
SAS USA: What do you think is the biggest change that is happening in these conversations?
DL: When we can decode a lot more of the genome, I think it’s going to change radically. The science is getting better and the computers are getting faster. Decoding is just going to increase exponentially. In general, moral and ethical discussions always lag a little behind scientific progress. Unless you’re a science fiction writer, projecting into the future what might be possible is not within most people’s understanding. You’re asking people with legal and ethical concerns to predict and represent the future actions of people with scientific concerns. So even those cultures coming together requires a leap.
SAS USA: What do you think are the limitations of talking about science in a play format?
DL: Incorporating scientific information in a way that’s dramatically potent is really the hardest part. Everything has to come from an emotional need rather than a need to inform. As soon as the audience can hear my voice trying to instruct, then they’re not in the play. Relaying exposition about just the basics required to understand the themes of the play without a lecture is hard.
SAS USA: There is a heavy dose of science in your play. Did you intend to teach a little about science?
DL: A lot of my impulse to write comes from my wonder at what I learn—my desire to share it, to communicate it well. Scientific progress thrills me. Anybody who says that the play is against science is missing a big point of the conversation. I want scientific research to go as far as it can go as fast as it can go, partly because I only have so many years left to live and I want to know everything I can know about being human. I want to know everything. That’s one of the great sorrows of mortality to me is that progress will continue and I won’t get to see it.
Being really rigorous in communication when obtaining informed consent, making sure that everything is understood and respected, will ultimately minimize pushback. Limit those issues that put the brakes on more research. I think if everybody is as respectful and goes to as many lengths as they can to create understanding so that there are no questions afterward, then science can progress. If people think I’m not respectful to the tribe and if people think I’m not respectful to science then those are the things that really hurt me because I want to deeply honor both perspectives.
SAS USA: When the audience walks out of the theater what do you want to get them to think about?
DL Couples have told me that they discovered they were on very different sides of the argument about medical testing. It was just something they never talked about. It raises a lot of questions about race and cultural sensitivity, and identity. Our country is so polarized—I hope people question if their viewpoints are actually the only valid viewpoints.
What theater does for me is it looks at what it is to be human now and it makes me check my preconceptions. I don’t want to be burdened with preconceptions and biases. It takes constant work to live a life of real awareness and openness to new ideas. It takes rigor. Theater is a wonderful vehicle to help you see and experience another person’s perspective.
SAS USA: Did you get your genome sequenced?
DL: I didn’t but my mom is doing it. My grandmother had Alzheimer’s. We’ve always discussed whether or not we wanted to be tested. I was like—absolutely! Everyone should find out everything there is to know! Knowledge is power! But have I done it? No. My mom saw the play and she’s getting it done.
SAS USA: So why haven’t you?
DL: Because my mouth is bigger than my feet? It’s scary. And it actually takes making the decision and going through with it. I’ll know a lot more once she has hers done.
SAS USA: Do you think it’s her responsibility or any family members’ responsibility to share once they do it?
DL: Well, I’d want to know. But that’s such a good question. How much do you tell someone? If you do know something about your child, do you tell your child and at what age and to what end—only if there’s something that can be done about it? Then do you engineer a child who’s free of those genomic traits if you can? It’s endless how many ethical issues are coming down the pike.
SAS USA: What’s your biggest concern about science?
DL: I really despair over the trend that scientists have to publish to get funding. It feels more and more like scientists are like senators and congressmen. Their focus can’t be on the actual work they have to do because most of their focus has to be on getting funding for it. Anything that’s going to hold progress back worries me. Scientific progress is part of our evolution. We were given these brains to find out who we are, why we’re here, and how things work. It’s one of the joys of being human.
SAS USA: What are you excited or curious about in science?
DL: The brain! Are we essentially chemical and electrical impulses? What forms our personalities? Can we control our personalities pharmaceutically—should we? Should we control it in our children? Where are the ethics in that? It’s all fascinating to me.
Informed consent is a tautology, and ‘knowledge is power’ is a mantra too often left unexamined. If you are not informed, you cannot give consent. You might be able to give permission but the definition of consent includes being informed. Knowledge about my genetic variation only gives me power if there are clear predictions that that variation implies. The majority of current genetic testing does not provide such clear predictions. Genetic testing for Alzheimers is a clear case in point. Most individuals will not receive a clear prediction from genetic testing for Alzheimers and they therefore do not gain the power they are seeking.