Freakonomics Radio - 131. Do You Really Want to Know Your Future?

Episode Date: June 20, 2013

You might think that someone with a 50-50 chance of getting a fatal disease would want to know for sure -- but you would be wrong. What does this say about our supposed thirst for certainty?

I think for my mother and for our family, the whole family was very important. You know, she was very kind to us and she was very loving and very warm. I think a lot of my warmth I get from her. That's Nancy Wexler. She's a professor of neuropsychology at Columbia University. One morning in the late 1960s, something strange happened to her mother, Leonore Wexler. She was 53 at the time. Mom was on jury duty crossing a great big street in Los Angeles, you know, eight o'clock in the morning, very well dressed, very well kept.

And a policeman just screamed at her and said, you know, aren't you ashamed of yourself being drunk so early in the morning? And she realized that her unsteady gait was one of the very first signs. So she called my dad in a panic and said, I think this horrible thing's happening. And she was diagnosed that afternoon with Huntington's. Huntington's disease is a horrible thing, a fatal neurological disorder. Huntington's affects every aspect of mind, thinking, and body. It causes all kinds of uncontrollable movements throughout your body. Your face wiggles, your arms move.

And then also, people very often have very severe depression, hallucinations, delusions, paranoia, obsessive-compulsive disorders, and also cognitive problems. So difficulty thinking, remembering, executive functioning, you know. So every aspect, really, of mind and body and thought. One more thing about Huntington's. It is purely hereditary, which means that if one of your parents has it, you have a

50% chance of inheriting the gene, which means you'll almost certainly get the disease itself. Nancy Wexler's mother had already seen all three of her brothers die from Huntington's, as well as her father. She knew the fate that was before her. In fact, at one point, my mother said, I'm not living this way, and she tried to commit suicide. I think the only thing that really saved our entire family is my father being totally brilliant and optimistic and said, well, you know, let's just find a cure. So in 1967, our family started the Hereditary Disease Foundation. Curing Huntington's turned out to be vastly more difficult than we thought.

But I've been working on it ever since 1967. Nancy Wexler had just graduated from college. She became a psychologist and she took over the Hereditary Disease Foundation that her father had started. She funded research, organized symposia. In 1972, Wexler learned from a colleague about some villages in Venezuela where Huntington's ran rampant. In the U.S., the disease affects about one in 10,000 people. But in these Venezuelan villages, where families had intermarried for years, the rate was far, far higher. In nearly every household, at least one person had Huntington's. So Wexler began traveling to Venezuela. She collected blood samples and she started to build huge family trees.

She needed to learn where exactly Huntington's came from. You know, we were looking for the gene because we knew if you could cure the gene, that's the cure for Huntington's. The breakthrough took a long, long time. But finally, it happened. In 1993, a research team led by Wexler found the Huntington's gene, IT15. It was on the short end of chromosome 4. In the middle of this tiny, teeny, tiny stilt village in the middle of Lake Marcaibo. It was these families on the stilt village who literally, it was their DNA that gave us the gene.

Their DNA. The idea was that finding the gene for Huntington's disease would lead to a cure for Huntington's disease. But it hasn't. Although Wexler and many others are still working on it. What Finding the Gene did enable was a test, a $300 blood test, that allows you to learn whether you will get Huntington's. Wexler's mother had died years earlier, in 1978, at the age of 63. The test had not been available in her lifetime.

If there had been a test available then, a test like the one that you helped develop, later, do you think your mom would have taken it at a young age? No. Why? Why should you have? Economics Radio, the podcast that explores the hidden side of everything. Here's your host, Stephen Dubner. If you could take a test that could foretell your future, at least your medical future, would you?

Would it be valuable for you to know if something bad was going to happen? that could foretell your future, at least your medical future, would you? Would it be valuable for you to know if something bad was going to happen? Or would it be more valuable to not know? This is actually quite a broad question of general interest to economists. Emily Oster is an economist at the University of Chicago's Booth School of Business. She's been doing research on Huntington's disease. Why? The question we started with was, how does knowing that your lifespan is limited impact your choices about investments in the future? Basically ask the question, if you knew that you were going to die at 60 rather than at 90,

would you change the amount of education that you got? And that has actually quite broad implications for understanding things like as countries get richer and people get higher life expectancy, will that impact their education and then impact economic growth? People with Huntington's usually start to get sick in their 30s or 40s, but there's a lot of variance. Even a toddler can start to show the symptoms. It worsens over time and eventually will kill you. So if you're in your 20s, let's say, and you've got one parent who has Huntington's

disease, you've probably already started to see its effects on your mother or father. And you know that you have a 50% chance of getting sick yourself. Emily Oster was intrigued by how people respond to this dilemma. She teamed up with two neurologists, Ira Scholson and Ray Dorsey, to find and interview people at risk for Huntington's, some of whom had already tested positive and some of whom had a parent with Huntington's but hadn't been tested themselves. Besides asking these people about the disease itself, Oster also wanted to know things like, are you going to college? Are you getting job training? Are you getting married or planning to have a family?

So we see differences on a few dimensions between people who know that they carry the Huntington's mutation and know that they don't. So one is that we see more early retirement among individuals who know that they carry the mutation. We see more divorce. We see individuals reporting changes in their recreation activities. They're more likely to borrow money. What about if you go back to people who are younger and acquiring human capital, go more college, more job training, things like that? Yeah, so when we look at that, what we see is that individuals who find out that they carry the mutation actually get much less education

than individuals who find out they do not. So we see much lower rates of college completion among individuals who know that they will develop Huntington's. We also see much lower rates of engagement in job training, both of which are sort of typical markers for human capital investment. What about marriage and having children? So we see, on average, quite similar rates of overall fertility in these different groups. That's something that's not actually in either of these papers because it's a little hard to

think about what direction you'd expect that to go. But from other analysis of this data, it looks like fertility is relatively unaffected by the disease. Really? So that's surprising to me. Is it to you? Yeah, I found that surprising, although I think it's difficult to think about how you would react to this disease. I think it's sort of quite difficult for me to think about. Now, let me ask you this. I also see that Huntington's is accompanied by, you know, a variety of disorders, including cognitive disorders, for instance, difficulty planning, organizing, and prioritizing tasks, according to the Mayo Clinic, as well as difficulty learning new information, but also

depression and things like that. So persuade me that you know for a fact that what you're seeing among these people who are diagnosed isn't in fact a result of the condition itself, as opposed to a conscious decision to not invest in themselves. When we look at education in particular, one of the tests that we do involves taking people who have no symptoms, who are tested early in life, kind of before they've completed their education decisions, but are at that time completely asymptomatic. a difference in whether they're sick. And so there, when we compare the educational choices of people who test and find out they carry the mutation to those who test and find out they don't, we can be at least somewhat confident that it is not about symptoms of the disease. Now, that's different than the question of depression, which I think is also quite important. And largely what we can say about depression is actually

in the data we see evidence on whether people are depressed. And we see people are initially, the first year after they get a bad test result, they are somewhat more depressed. But then they basically return to baseline for quite a long time. Most people are kind of about the same amount of happy most of the time. Coming up on Freakonomics Radio, you would think that if you stood a 50-50 chance of getting a fatal disease, you'd want to know, wouldn't you? Or would you? You know, I think this is something that is horrific information,

very, very powerful information. From WNYC and APM American Public Media, this is Freakonomics Radio. Here's your host, Stephen Dubner. The economist Emily Oster was trying to figure out what kind of life decisions are made by people who are at risk for Huntington's disease. Now, some of these people had had the blood test and knew they would eventually develop symptoms and die from the disease. Others had a 50-50 chance of having the genetic mutation, but hadn't been tested. So for the people who had not been tested and know they have a parent, the choice that we were most interested in was the choice to undergo testing. So one theory you might have, and this would be a theory that would be informed by standard

economics, is that people should value information and they should want to get the test because even if it is a bad result, bad in the sense that they have the mutation, it will still help them make better decisions in their life. But in practice, what you see, and this isn't just in our data, this is in many people have shown this, is that in fact, there's very little testing. Very few people seem interested in finding out whether they carry the mutation or not. And that's actually similar to some other settings like BRCA testing for breast cancer markers, where we haven't seen as much testing as people might have thought.

When you say very few, you mean how few, Emily? So in our population, something like 5% of people who are at risk get the test. So these are people – of people with a 50% chance of developing Huntington's, only about 5% of them choose to find out whether that will happen. That number was to you, I assume, shockingly low, yes? Yeah, that number seemed very low. I certainly would not have expected it to be 100%, but I think 5% seemed really very small.

And so I think sometimes, you know, as economists, we think information is good. I think we do need to ask the question, is information, in fact, good? Would it make these guys better off to know this? And so should we be really, really encouraging people to do this? Or in fact, does it seem like it would really be making them worse off, in which case we definitely don't want to do that. And I guess also you need to think about, is it better off for whom? Is it better off for them?

Or is it better off for the rest, you know, their family, friends and society too? Yep, exactly. So do you have an answer to that question at all? Yeah. So I think in some sense we do. So what we do in our paper about testing is we try to think about exactly, as you asked, the question of why people don't want to undertake this test. And we go through some stories I think economists would like, like is it because the test is expensive or people don't know about the test? And those don't seem to be stories that really hold up. The test isn't very expensive.

Everyone seems to know that it is something that's available. And then we try to think about a model, like an economic model, of why people might not get this test. And I think what we come down to is the view that, in fact, largely the reason that people don't might not get this test. And I think what we come down to is the view that, in fact, largely the reason that people don't want to get this test is because while they are untested, they seem to be able to basically pretend everything is fine and that that may be very valuable. What does that say to you about just the way that human beings as kind of decision makers think about the future, how they budget for the future in terms of, you know, time and human capital and money and all

that? I think what it tells us is that people care both about what they think will happen in the future and what actually happens. So, you know, I enjoy going on a cruise, but I also value the time leading up to the cruise where I get to think about how great the cruise is going to be. I think often our normal sort of standard economic models would basically say we only value the second thing. The only thing that's beneficial about a cruise is the literal experience of being on the cruise. I think what this says is in fact something that's probably more comfortable for most non-economists, which is that there's some value of kind of what you think is going to happen that that has like real, real benefits or real costs for you.

Well, let me ask you this then. And we should make clear, your parents are both economists, aren't they? That's true. And my husband. And your husband, you have a child who's what, a year or so old? Two. Two. That child will almost certainly then be an economist. Right. It's almost inevitable.

Well, here's what I wanted to ask you. I mean, we do know that economists think about the world differently, and we appreciate that, especially on this program. I mean, we love that. On the other hand, there is this assumption among economists and within economics that people do value information and that they eschew or try to get rid of uncertainty because economists see that uncertainty brings about bad things. But I'm just curious if the rather strong evidence that so many people embrace uncertainty in their own private lives may have changed or nuanced a little bit the way that you as an economist think about the downsides of uncertainty. Maybe there is something to be said for it. No, I think – no, absolutely I think that I have come to think that in fact for a much larger share of the population than I would have expected,

it seems like this preference for living with uncertainty is quite strong. And I would have said some people have that preference. It seems surprising to learn that basically, at least in this population, it's like the vast majority of people appear to be much more interested in living with uncertainty, which isn't something that I think would be true for me and I would not have thought would be true for so many people. And it doesn't weaken your preference for certainty at all. No, I don't think so.

One of the papers that Emily Oster co-authored was called Optimal Expectations and Limited Medical Testing, Evidence from Huntington's Disease. Another was Limited Life Expectancy, Human Capital, and Health Investments. Now, if you're an economist, that's just the way you think. If you listen to Freakonomics Radio, which you do, you are, you probably at least appreciate to some degree that kind of thinking. But if you're someone who comes from a Huntington's family, who's seen a parent die maybe, and who's been tormented for years about whether the same future awaits you, the economist's way of thinking can be hard to stomach.

I was just totally offended by the titles of these articles that came out. That's Nancy Wexler again. She's the Huntington's researcher whose mother and three uncles died from the disease. You know, genetic adverse selection evidence from long-term care insurance in Huntington's. And it talks about, I mean, these are friends of mine. And I think every single one of these articles was terrible. Wexler also understands why only 5% of the people at risk for Huntington's decide to take a blood test, the blood test that she helped develop to see if they will get the disease. You know, I think this is something that is horrific information, very, very powerful information. If you are somebody who has a 50% risk, as most people, you know, at risk around the world. There is nothing, nothing whatsoever you

can do that makes any difference whatsoever. Nothing. Nothing, nothing, nothing, nothing, nothing. There's no treatment you can take. There's nothing to forestall it. And if we actually had something that

made a difference in treatment, I think that would make a huge difference. Nancy Wexler is 67 years old. She has an older sister, Alice, who has written about Huntington's disease within the Wexler family. Now remember, because their mother had Huntington's, they were both born with a 50% chance of getting it. Well, I think both my sister and I, we both thought, well, wouldn't it be fun since we found the marker and the gene, wouldn't it be fun to be the first getting tested? So luckily my father is a psychoanalyst. What are you doing? What are you doing?

Fun? What are you talking about, fun? What kind of fun is that? And I think having him actually express a reality, you know, he all of us could find out both of us actually might get Huntington's and die. And that was terrible. You know, at least having a 50-50 hope, you know, that ambiguity would go your way, you know, was helpful. And I think what another big, huge stress that people do not appreciate enough is being watched, because once you're a public figure, like me, like my friends, everybody watches you.

You know, oh, does she have Huntington's? Does he have Huntington's? You know. Now, and you've, I just want to clarify, if you want to clarify for me, is it true that you've never taken the test yourself then? Because it's something that I think gives permission to everybody to say, I have privacy, I have boundaries, I have rights. But I think since you're being very friendly, I haven't. But again, I think it depends an awful lot on what kinds of treatments actually make a difference. Of course. So let's imagine that there's someone listening to this program.

Let's say they're 18 years old or so with a lot of decisions coming up about what to do, what kind of family to be involved with and so on. And this is an 18-year-old with one parent who has Huntington's. Talk to me about what risks that person has in testing if the test is positive. How does that affect this person's life financially, societally, perhaps legally, labor-wise, and so on? Well, the reality of our country is that if a person is known to have even a risk for genetic disease for Huntington's in the future, they quickly become an uninsurable person. If they have a job, if it's a job that requires education or even dexterity or skill,

you can lose the job. And GINA, the Genetic Information Non-Discrimination Act, or GINA, is supposed to protect you against that. But actually, you have to prove that it was Huntington's that caused you to lose your job. That's the bad part of GINA. I think everyone thinks really that some secret soul of their bodies or mind, that they're truly unattractive. If they know this, they won't love them. And so people will just get into relationships that are brutal, violent, disparaging. I know a woman who dated every single horrible person she could possibly find. Because, you know, literally, she thought,

well, nobody's going to like me, so I might as well lose my virginity out of shit. And that's, you know, I think that, you know, we do that. You know, we have our identity very much tied to who we think we are. And especially when the outside world is saying, this is repugnant, this is repulsive, then we act it out in bad ways.

It is toxic knowledge. It is difficult. If we could have more conversations about the knowledge, you know, before people are saying, okay, well, it's too expensive for you to live in ambiguity, so line up here. I mean, I think we have concentration camps

where everybody has to line up here and behave themselves or not. I think you don't want to do that. You don't want to eliminate people who are in any way physiologically or genetically different. But the only way I think we can make people feel comfortable about talking is if we really genuinely feel that it's okay to talk about it. We genuinely feel that you're not going to take away my health insurance, my job, my life, my kids, you know, and it's not going to have this kind of incredible retribution.

Then I think, well, thatology at Columbia, and she's the president of the Hereditary Disease Foundation. Before that, Emily Oster, an economist at the University of Chicago. In the course of reporting this show, we also talked with a few other people who have a 50-50 chance of getting Huntington's but haven't been tested. We thought you might want to hear from them too. My name is Melinda Marr. I'm 25 years old and I'm living at risk for Huntington's disease. My name is Christy. I'm from North Carolina. I'm at risk for Huntington's disease. Well, my name is Shawna Martin. I am from Madison, Wisconsin. I'm

33 years old. I'm a world champion lumberjack athlete, so I compete in the sports of log rolling and boom running. The downside is I've been living at risk for Huntington's disease. My mother just passed away from the disease a few months ago. I mean, right now, at age 25, I hope to get a teaching job and I hope to move away from home and I hope to be able to kind of move out and be on my own and have my own life and independence.

And still right now, I feel like if I were to test positive, I'd be afraid of that independence. And still right now I feel like if I were to test positive, I'd be afraid of that independence. I'm getting married in a few months and we're starting to explore having kids and we chatted about it and I'm still quite firm that I don't want to know. So firm that I'm probably going to invest quite a bit of money in in vitro fertilization just to not find out and make sure my kids don't have it. I get up every day wondering do I want to be tested for Huntington's and I'm 40 years old, college graduate, working for a large university and very happy with what I'm doing but I can't say that it doesn't haunt me every day.

And so the longer I kind of procrastinate against it, testing, I guess the longer I can say, well, I don't have Huntington's. You know, does that make sense? Hey, podcast listeners. On the next Freakonomics Radio, we ask, what is the cheapest, most nutritious, and bountiful food that has ever existed in history. Technically, there are pickles, so I think there are vegetables. It has meat glue.

Fresh reconstituted meat powder. It's kind of dry and slightly rubbery. They're, you know, a piece of synecdoche for American mass, bland, synthetic corporatism. What are they talking about? That's next time on Freakonomics Radio. Freakonomics Radio is produced by WNYC, APM, American Public Media, and Dubner Productions. This episode was produced by Catherine Wells. Our staff includes David Herman, Bray Lamb, Susie Lechtenberg, Chris Bannon, and Colin Campbell, with help from Ryan Hagen. If you want more Freakonomics Radio, you can

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