Stories on #personalgenome increase as price of sequencing goes down

The so-called personal genome is getting a lot of ink and airtime.  NPR just finished a series on the issue, complete with a survey.

NPR’s Rob Stein explored many of the implications of this technology in his four-part series “The $1,000 Genome.” They’re complicated, to say the least.

How many people out there would be willing to get their entire genome mapped? And are they prepared for the revelations it could make about their health and risk for disease?

So we decided to ask you, readers of Shots, in an online survey we added to Stein’s posts from the series. The survey is certainly not scientific. But given the interest in the series, we thought a few questions would be worth a try. It turns out the respondents leaned strongly in favor of the tests, and the insight they may lend to understanding health.

First, we asked: “Would you have your genome sequenced if you could afford it?”

Of the 6,627 people who participated, 81 percent said yes. About 10 percent were undecided, while 9 percent said no.

A few reports emerged from the Consumer Genetics Conference in Boston in early October: Mass High Tech, Tech Review and Esquire chimed in:

BOSTON — Male pattern baldness, it appears, is the least of Ken Chahine’s genetic problems. The dapper but follicularly challenged senior vice president and general manager for DNA at is the driving force behind the online genealogical research company’s press to encourage all Americans to use genetic testing to enlarge their family trees.

Finally,  23andM e co-founder and CEO Anne Wojcicki came to Cambridge in September to talk about her $299  DNA analysis service. Here find a Q&A from Nature’s new SpotON website.

Q. You said were bombarded with tough questions when you gave a talk at Harvard last year. Can you describe that event?

Being in Silicon Valley and being quite used to the Facebook culture of sharing–there was a lot of concern about people sharing. It’s dangerous, it’s an untested world. There was a lot of concern about privacy … I understand all of it. We work a lot with privacy experts and we take it very seriously. To be honest, I loved it. I loved getting that feedback … That’s the only way we’re going to improve and grow.

Q. Did you also say they also raised concerns about the ability of consumers to interpret the data?

With some of those concerns about—can you handle all this information? — there are a number academic groups independent of us who have done studies to show that people can understand this (genetic) information and make sense of it. So, this is becoming less and less of a concern. But people always worry – you’re returning lots of data (to consumers) you don’t’ know what it’s all means? How are you going to handle that?

That’s where we really see ourselves partnering with the academic world and with physicians. Let’s do it in the responsible way. And we’re always open to change.


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