131. Do You Really Want to Know Your Future?

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?

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:01Stephen J. Dubner?

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• 0:45Stephen J. Dubner?

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• 1:28Stephen J. Dubner?

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• 2:23Speaker 01

  I think for my mother and for her 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.

• 2:35Stephen J. Dubner?

  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.

• 2:49Speaker 01

  Mom was on jury duty crossing a great big street in Los Angeles. You know, 8 o'clock in the morning, very well dressed, very well kept. And the 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 unstable gait was one of the very first signs of. She called my dad in a panic and said, "I think there's horrible things happening." And she was diagnosed that afternoon with Huntington's.

• 3:25Stephen J. Dubner?

  Huntington's disease is a horrible thing, a fatal neurological disorder.

• 3:30Speaker 01

  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, there are every aspect really of mind and body and thought.

• 4:16Stephen J. Dubner?

  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 Wechsler's mother had already seen all three of her brothers die from Huntington's, as well as her father.

• 4:35Speaker 01

  You know, 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 has turned out to be vastly more difficult than we thought. But I've been working on it ever since 1967.

• 5:22Stephen J. Dubner?

  Nancy Wechsler 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, Wechsler learned from a colleague about some villages in Venezuela where Huntington's ran rampant. In the US, the disease affects about 1 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 Wechsler began traveling to Venezuela. She collected blood samples, and she started to build huge family trees.

• 6:05Stephen J. Dubner?

  She needed to learn where, exactly, Huntington's came from.

• 6:11Speaker 01

  You know, we were looking for the gene because we knew if you could cure the gene, that's the cure for Huntington's.

• 6:18Stephen J. Dubner?

  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 four.

• 6:34Speaker 01

  In the middle of this totally tiny, teeny, tiny stilt village in the middle of Lake Maricaybo. It was these families on this stilt village who literally, it was their DNA that gave us the gene. Their DNA.

• 6:48Stephen J. Dubner?

  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?

• 7:30Speaker 01

  No.

• 7:31Stephen J. Dubner?

  Why?

• 7:35Speaker 01

  Why should she have?

• 7:47Speaker 02

  From WNYC and APM, American Public Media, this is Freakonomics Radio, the podcast that explores the hidden side of everything. Here's your host, Stephen Dubner.

• 8:11Stephen J. 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? Or would it be more valuable to not know?

• 8:26Speaker 03

  This is actually quite a broad question of general interest to economists.

• 8:31Stephen J. Dubner?

  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?

• 8:40Speaker 03

  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?

• 9:16Stephen J. Dubner?

  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 Shulson and Ray Dorsey, to find and interview

• 9:57Stephen J. Dubner?

  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?

• 10:21Speaker 03

  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.

• 10:43Stephen J. Dubner?

  What about if you go back to people who are younger and acquiring human capital, more college, more job training, things like that?

• 10:49Speaker 03

  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 and job training, both of which are sort of typical markers for human capital investment.

• 11:18Stephen J. Dubner?

  What about marriage and having children?

• 11:20Speaker 03

  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.

• 11:41Stephen J. Dubner?

  Really? So that's surprising to me, is it to you?

• 11:46Speaker 03

  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.

• 11:59Stephen J. Dubner?

  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 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.

• 12:33Speaker 03

  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. So there's no sense in which there is 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.

• 13:14Speaker 03

  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.

• 13:56Stephen J. Dubner?

  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?

• 14:07Speaker 01

  You know, I think this is something that is horrific information, very, very powerful information.

• 14:48Stephen J. Dubner?

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• 15:31Stephen J. Dubner?

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• 15:52Stephen J. Dubner?

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• 16:40Stephen J. Dubner?

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• 17:14Speaker 02

  From WNYC and APM, American Public Media, this is Freakonomics Radio. Here's your host, Stephen Dubner.

• 17:27Stephen J. 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.

• 17:47Speaker 03

  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.

• 18:30Speaker 03

  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.

• 18:43Stephen J. Dubner?

  When you say "very few," you mean how few, Emily?

• 18:45Speaker 03

  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.

• 19:00Stephen J. Dubner?

  That number was, to you, I assume, shockingly low, yes?

• 19:04Speaker 03

  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?

• 19:33Stephen J. Dubner?

  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?

• 19:40Speaker 03

  Exactly.

• 19:41Stephen J. Dubner?

  So, do you have an answer to that question at all?

• 19:43Speaker 03

  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 of the test is expensive, or people don't know about the test? Or, 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, 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 want to get this test is because, while they are untested...

• 20:29Speaker 03

  They seem to be able to basically pretend everything is fine.

• 20:33Stephen J. Dubner?

  Mm-hmm.

• 20:34Speaker 03

  And that that may be very valuable.

• 20:36Stephen J. Dubner?

  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?

• 20:46Speaker 03

  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

• 21:29Speaker 03

  happen, that that has like real benefits or real costs for you.

• 21:33Stephen J. Dubner?

  Well, let me ask you this then, and we should make clear, your parents are both economists, aren't they?

• 21:39Speaker 03

  That's true, and my husband.

• 21:40Stephen J. Dubner?

  And your husband. You have a child who's, what, a year or so old?

• 21:43Speaker 03

  Two.

• 21:44Stephen J. Dubner?

  Two? That child will almost certainly then be an economist.

• 21:46Speaker 03

  Right, it's almost inevitable.

• 21:48Stephen J. Dubner?

  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, and maybe there is something to be said for it.

• 22:29Speaker 03

  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.

• 23:01Stephen J. Dubner?

  And it doesn't weaken your preference for certainty at all?

• 23:04Speaker 03

  No, I don't think so.

• 23:13Stephen J. Dubner?

  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.

• 23:58Speaker 01

  I was just totally offended by the titles of these articles that came out.

• 24:05Stephen J. Dubner?

  That's Nancy Wexler again. She's the Huntington's researcher, whose mother and three uncles died from the disease.

• 24:12Speaker 01

  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.

• 24:27Stephen J. Dubner?

  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.

• 24:40Speaker 01

  You know, I think this is something that is...

• 24:48Speaker 01

  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 first solid. And if we actually had something that made a difference in treatment, I think that would make a huge difference.

• 25:39Stephen J. Dubner?

  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.

• 25:55Speaker 01

  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? And then, so we all, you know, luckily, my father is a psychanalyst, and says, what are you doing? You know, what are you doing? Fun? What are you talking about, fun? What kind of fun is that? And I think, you know, having him actually express the 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

• 26:39Speaker 01

  know, was, 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?

• 26:59Stephen J. Dubner?

  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?

• 27:09Speaker 01

  Well, I'll tell you, I usually say that is a private decision.

• 27:16Stephen J. Dubner?

  Mm-hmm.

• 27:17Speaker 01

  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 treatment actually would make a difference.

• 27:44Stephen J. Dubner?

  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, you know, 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. You know, how does that affect this person's life financially, societally, perhaps legally, labor-wise, and so on?

• 28:22Speaker 01

  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 a job. And GINA, the Genetic Information Nondiscrimination Act, or GINA...

• 29:03Speaker 01

  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. People think, I think, everyone thinks really that, you know, some secret soul of their bodies or minds, that they're truly unattractive, that nobody, 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 she,

• 29:47Speaker 01

  you know, literally, she thought, "Well, nobody's gonna 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, you know, when the outside world is saying, you know, being, "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."

• 30:32Speaker 01

  I mean, I think, you know, we have concentration camps where everybody has to line up here, you know, behave themselves or not. I think we 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 gonna take away my health insurance, my job, my life, my kids, you know, and it's not gonna have this kind of incredible retribution. Then I think, "Well, that's, you know, that's the world I wanna live in."

• 31:28Stephen J. Dubner?

  Nancy Wexler is a professor of neuropsychology at Columbia, and she's the president of the Hereditary Disease Foundation. Before that, Emily Oster, an economist at the University of Chicago.

• 31:54Stephen J. Dubner?

  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.

• 32:06Speaker 04

  My name is Melinda Marr. I'm 25 years old, and I'm living at risk for Huntington's disease.

• 32:12Speaker 05

  My name is Kristi. I'm from North Carolina. I'm at risk for Huntington's disease.

• 32:19Speaker 06

  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.

• 32:42Speaker 04

  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.

• 33:06Speaker 06

  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.

• 33:28Speaker 05

  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?

• 34:12Stephen J. Dubner?

  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?

• 34:22Speaker 07

  Technically, there are pickles, so I think they're vegetables. Has meat glue.

• 34:27Speaker 08

  Fresh reconstituted meat powder, kind of dry and slightly rubbery.

• 34:32Speaker 09

  They're, you know, a piece of synecdoche for American mass bland synthetic corporatism.

• 34:45Stephen J. Dubner?

  What are they talking about? That's next time on Freakonomics Radio.

• 34:56Speaker 02

  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, Borey Lamb, Susie Lechtenberg, Chris Bannon, and Colin Campbell, with help from Ryan Hagen. If you want more Freakonomics Radio, you can subscribe to our podcast on iTunes or go to Freakonomics.com, where you'll find lots of radio, a blog, the books, and more.

• 35:39Stephen J. Dubner?

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• 36:12Stephen J. Dubner?

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  You fell in love at first crunch, and now the crispy chicken Crunchwrap Slider is back at Taco Bell, but with a twist. It's crispy, all-white meat chicken nuggets inside a Slider-sized Crunchwrap. But now you can enjoy them with the kick of Hidden Valley Diablo Ranch. Or try the tortilla chip-coated nuggets on their own. They're waiting for you. The Crispy Chicken Crunchwrap Slider, a brand-new classic, is back, only at Taco Bell.

• 37:06Speaker 11

  This episode is brought to you by Charles Schwab. Is there a right time to sell a stock? Are you taking the right risks with your portfolio? Financial decisions can be tricky, and often, your own cognitive and emotional biases can lead you astray. Financial Decoder, an original podcast from Charles Schwab, can help. Join host Mark Reapy as he offers practical solutions to help overcome the cognitive and emotional biases that may affect your investing decisions. Listen at schwab.com/financialdecoder.