Is a Healthy 25-Year-Old Really at Risk for Macular Degeneration?

Genetic testing made Discover editor Boonsri Dickinson fear for the future of her eyes, and her gut.
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TRANSCRIPT

Paul Hoffman: So, Boonsri, tell me about the three tests that you took. I understand you came back and you started worrying about Crohn’s disease and mascular degeneration.

Boonsri Dickinson: Two of the companies, 23andMe and deCODEme, gave me some information that I could check, like, when I drink wine, my face gets flushed, I have dry earwax, I’ve brown eyes, I’m not a sprinter. And although it said that I’m likely tolerant to lactose, if I had a sip of milk, you guys would all want to hold your nose.

When I read my report on common diseases, I realized the information is useless. There’s no way to tell how accurate the so-called risks are until you actually have a disease.

Esther Dyson: Even then you don’t know what the risk was.

Boonsri Dickinson: Right. Crohn’s disease and macular degeneration are two diseases that I pay attention to, because I have poor eyesight. So loss of vision is something that meant something to me. And then Crohn’s disease is another one. I have a sensitive stomach. So I’ve learned what foods to avoid.

But the limitations, for me, were far greater. I’m half Asian and half European. So when I looked at the profiles, I got conflicting results just because they ask if you’re European or if you’re Asian. They haven’t worked out a way. Although one of the board members said that he was going to work on that.

Esther Dyson: Is that Patrick Chung?

Boonsri Dickinson: George.

Esther Dyson: Oh, he’s, sorry, scientific board.

Boonsri Dickinson: And so they haven’t found a way to calculate risk for people of mixed ethnicities. And since I wrote this story [“How Much Can You Learn From a Home DNA Test?”; from the September 2008 issue of “Discover” magazine] a year ago, the companies continue to update their Web sites with more diseases, more risks. But just because they’re adding more data doesn’t mean that they know more about the role that genes play in the onset of disease.

And only, Navigenics, the third company that I tested with, they offered in-house counseling. And even then their genetic counselor wouldn’t really tell me what my genetic profile meant. She just said I have to interpret it.

Recorded on: July 14, 2009. 

 

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