Do You Really Want to Know Your Future? A New Freakonomics Radio Podcast

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(Photo: Micah Baldwin)

Our latest podcast is called “Do You Really Want to Know Your Future?” (You can download/subscribe at iTunes, get the RSS feed, or listen via the media player above. You can also read the transcript; it includes credits for the music you’ll hear in the episode.)

If you could take a test that would foretell your future – at least your medical future – would you? And if you did, how would that affect the way you live your life?

The economist Emily Oster wondered how people at risk for the neurological disease Huntington’s answer those questions. Huntington’s is genetic: the children of a person with the disease have a 50 percent chance of carrying the mutation themselves. Symptoms usually surface in one’s 30s or 40s, worsen over time, and end in death. Oster wanted to know how people with the gene respond to the prospect of a shortened lifespan.

OSTER: 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 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?

Oster worked with neurologists Ray Dorsey and Ira Shoulson to survey people at risk for the disease. They found that people who know they carry the gene do in fact make different choices about education, retirement, and marriage (paper available here). But a second paper found that although a $300 blood test can tell people whether they will get the disease, only 5 percent of those at risk choose to do so.

To explain why that number would be so low, Stephen Dubner talks with Nancy Wexler, a professor of neuropsychology at Columbia and president of the Hereditary Disease Foundation. Wexler’s mother died of Huntington’s in 1978, and Wexler led the team that located the gene for the disease in 1993. The discovery enabled genetic testing, but she understands why so few people want to know their future.

WEXLER: You know, I think this is something that is horrific information, very, very powerful information. If you’re somebody who has a 50 percent risk … there is nothing, nothing whatsoever that you can do that makes any difference whatsoever. 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.

You’ll also hear from three women at risk for the disease about why they haven’t taken the test.


Krista

I got tested for a kidney disease called Polycystic Kidney Disease when I was 23. My father had it and I had a 50% chance of inheriting it, which I did. This disease is also incurable and life-threatening and having lived 7 years with the diagnosis I would say I wish I hadn't been tested. It has given me a perspective and strength I would not have otherwise, but ultimately I wish I just tried to live as healthy as possible without knowing, as it's taken a toll mentally and emotionally. However, I'd say the biggest upside to getting tested is being able to participate in medical studies for possible treatments, which I'm doing right now. I'm grateful that I'm able to help the progression of research and speed up treatments for others with my disease.

Alec S.

I just finished listening to this podcast, and I thought it was very interesting. I have a disease called Hereditary Hemorhagic Telangictasia (or HHT). It is similar to Huntington's in that if a parent has it, the children have 50% chance of also having it, they know where it is in the DNA, and there is still no cure. It is not nearly such a scary fate as Huntington's, but at the same time, I know that it will be the cause of my death. It was interesting to hear the questions asked in the podcast, because I've lived with the answers to them my whole life. Of course you don't want to get tested! Why would you? You don't just go into the doctor and say "hey, find something wrong with me" likewise, if you have a higher chance of having a disease, there's no reason you should find out while you're still feeling healthy. If there were a cure, or some way to prevent it, that would be totally different. With HHT, we have the possibility of developing faulty blood vessels in mainly our brains, lungs, and liver. If they develop in our lungs or brain, we could die of a stroke or heart attack in our early 20's. Because of this, they do recommend that we get tested, and luckily, most of the AVMs (fautly blood vessels) can be fixed so we don't die so young. Anyway, enough backstory. I am a new mother of a beautiful girl, and while I want to make sure she doesn't have any AVMs, I also don't want to have her tested. It is such a battle between wanting to make sure she's healthy, and the fear of what might have to happen if she's not. It's just easier to say "look at her, of course she's healthy" rather than agonize over medical bills and test results and whether she will develop AVMs as she gets older. It does not possess me every day of life, usually only when I get a nose bleed. I also don't change my perspective too much, although I do think it will change the older I get. Since it gets worse as I get older, I can still lead a pretty normal life until I'm about 60. I imagine then I will be more likely to seize the day then because I know my life span will be possibly decades shorter than if I was not affected. Although it is a rare and humbling situation my family has, my mom frequently reminds me "everyone has something, we're just lucky enough to know what ours is" most everyone has some hereditary medical something-or-other being passed down, and really, most just don't have to face it until much father down the road. We all know we're going to die, some are just made aware of the fact (and choose whether to ignore it or not) much sooner than others.

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21064a01

Stitcher feed on this show has failed so many times. Anyone TRIED to fix this problem yet?

frank

I love freakonomics and huntington's runs in my family. I was one of the 5-10% who have actually taken the test. Test came back negative. Really glad to see the disease getting attention.

Matthew

Anyone know the name of the song playing around the 12:50 mark?

Mark

The music is listed in the audio transcript

breh

This is the first freakonmics podcast I have listened to, it's great! And for me the topic sort-of hits home for me. I was diagnosed with a chronic autoimmune disease at 19 that I know will eventually probably be the thing that kills me, I've been living with it for 17 years now. I've always tried to "stop and smell the roses" knowing my time here is shorter than most. But I also feel like without knowing maybe I would have strived for more... Very interesting to hear my behavior is so typical that it can be quantified.

Bella

I just recently took the test to know whether or not I have the huntington's disease (my mother has it), and boy was it such a process...

I am 21 years old, and the clinic found it controversial that someone my age would be tested for something so life altering. They continuously postponed my decision, making me go through several steps before I can finally take the test. They went so far, as to have all the doctors related to this field sit me in a small room and tell me they don't think it's a good idea unless I'm getting married or choosing to have a child. I thought this logic was incredibly flawed but that's besides the point.

For all it's worth, I don't resent the procedure. It allowed me to develop a mature outlook in life. I was not scared for the test. I thought that having the disease would just give me an alternative lifestyle that I could be happy with too, considering the fact that I'm a very independent person who enjoys delving deeply into my own interests and goals.

I don't have the gene. I got a tattoo that evening to celebrate.

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Daniel S. Sax MD

An excellent, informative, thought provoking discussion.But for the negative social, insurance, economic, legal and vocational arguments against knowledge of the presence of the gene one should consider the benefits from knowing the number of of CAG expansions, which helps explain anticipation and gives a n indication when HD might become manifest. Another point to consider is when when to get the test i.e. as early as adolescence or at 55 or 65 when the information might be beneficial not only to the person but to his/he offspring.

Eva Podietz

Maybe some people don't want to know if they have a gene for a disease because they don't want to ruin their changes of getting insurance coverage.

Kenneth Hoffman

The question of why 95% of persons with a parent who had Huntington disease opt not to take the test while knowing that if they have it and have a family they would pass on the gene to future generation. The reason they give is that it would affect their ability to make a living, being social outcasts besides the trauma of the disease itself. I would think that their ability to prevent their offspring from the agony of Huntington's would be enough reason to say nothing of their personal responsibility. They could still keep their knowledge secret while saving future generations.

Khannea SunTzu

In a few decades we have the ability to change genes and/or gene expression. In other words, genes will stop be deterministic in the onset of genetic diseases. We aren't there yet, but many people alive now who receive a genetic test "sentence" may see such an outcome reverse and be cured.

Jyothi nayak

I want know my future life

Shem

I world get tested because I would like to know the future risk I'm going to be placing on my future kids. It is in no way about be. Weather it is Huntington's disease or another horrible ailment like Sickle Cell anemia (completely different from Huntington's but just as horrible in my eyes) I wouldn't want my children too suffer because of my selfish notions. "Well hun there's a 50% or 0% chance you will suffer in life because I didn't want to bother myself to get tested. Cheers."

Enter your name...krishna narah

i want to know about my career and when will i get marrhage?

saikumar

i want to know my furture

Nicki Marshall

For 12 years I debated whether or not I should get tested for Huntington's Disease. However, after reading an article about the work of Michael Hayden and his group of scientists at UBC I decided to take the plunge, as in their studies with laboratory mice, they were able to halt but not reverse emerging symptoms of the disease. Of course I had to prepare myself mentally for the possibility the results would be positive for the disease. However, I was completely caught off guard when I got my HD test results, which thankfully were negative for the disease. I had not prepared myself for that news and am still surprised at how overwhelming the news was....I was so choked up I was on the verge of tears and could not speak. To try to explain the reaction is still difficult...It was so much more than relief; it wasn't guilt but I did make a commitment to help in any way I could to find an effective treatment.

Since then I have participated with a family member who does have the gene in a study that tracks our motor, cognitive and neurological well being through a series of tests that are repeated annually. At the earliest sign of disease related symptoms, my relative will be able to participate in a drug study with the hopes of getting fast tracked ahead of the disease with emerging drug treatments.

The knowledge as well as the lack of knowledge has a profound effect on anyone facing the 50/50 probability. My decision to get tested was predicated on the fact that the positive results on Michael Hayden's break through were limited to halting the onset of symptoms, but not reversing them.

To suggest that people who have the gene should not have children is harsh and unwarranted. First off, it is possible that none of their children will carry the gene.
Secondly, Huntington's often occurs later in life, so the gene carriers will have plenty of time to have rich, full lives and possibly contribute something monumental to humanity, as is currently happening in many ways and places around the world.
Thirdly, a cure may be just around the corner. Science is moving rapidly and scientists around the globe are sharing what they are learning with the hopes of beating the clock for those who are not yet symptomatic.

What is needed is the will to defeat Huntington's Disease, which, as has been clearly stated, has no treatment to effectively minimize the relentless progression of this heartless disease. We need the drug companies to get on board to do the testing, but that is a very expensive proposition, and unlike diseases with higher casualty rates, the return on their investment is perhaps a little slower than say a treatment for Alzheimer's Disease.

My the Force be with us!

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Lokendra solanky

My dob 30 july 1994 at 9:45 min. I want to know that what will be the my future