Do You Really Want to Know Your Future? (Ep. 131)
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.