Genetic Testing Anxiety

Friday, October 18, 2013

Transcript

Brooke and OTM producer PJ Vogt prepare to send their saliva off to 23andMe, a company that analyzes DNA information. Before they prepare their samples, Brooke and PJ talk with OTM senior producer Katya Rogers, and former OTM producer Jamie York about what they hope to find out from their genetic testing, what they’re concerned about discovering, and the value of having their genetic information online.

Hosted by:

Brooke Gladstone and PJ Vogt

Comments [16]

Dan from Michigan from Michigan

23andme share the same business model with Google, the deal is not in what they provide to you but what they are getting from you. Is not a coincidence that the 23andme cofounder was married with Google cofounder. If they really run all the markers that they report they are losing money. Google now know what you like to buy as a consumer, and 23andme would like to know what need to buy as a patient.

Dec. 07 2013 08:39 AM
Chas from Walla Walla

After listening to this segment I bought a test kit and sent it in. FDA shut them down yesterday. Did you miss the FDA concerns?

Nov. 26 2013 04:56 PM
ac from Boston

I felt this story should have been clearer about the limitations in genetic testing's ability to determine ethnic and geographic ancestry. This link seems informative: http://ashg.org/pdf/ASHGAncestryTestingStatement_FINAL.pdf

Nov. 11 2013 07:01 PM
Phil from Philadelphia

With all the references to 23 and Me, this segment seemed like a product placement. Has 23 and Me ever sponsored On the Media, WNYC or any affiliated podcast or show? Why is it necessary to put their logo next to this story or even refer to them by name?

Oct. 30 2013 12:52 PM
essjay from SF Bay Area

I purchased a DNA kit from 23andme after hearing this segment - just sent the sample in today.

I had/have reservations about the privacy aspects as well. Not only are these people obtaining/storing the most intimate information about me, but when I registered, they also requested DOB, health history, medications (prescription and non), etc. This info would be subject to HIPAA if solicited by a medical provider; I hope 23andme is subject to the same or equally stringent privacy rules :-(

There's another genie that can't be put back in the bottle...

Oct. 28 2013 04:47 PM
jennifer from Long Island

I've done 23andme for myself and my adopted children. Your haplogroup only reflects your maternal ancestry- if you are a woman- if you are a guy, with both x & y, you get paternal also. However the total sum of your genetics is mad up of all of your ancestors in greater or lesser degrees you can be connected to dna relatives of close or very distant connection on both sides of your family tree. The health info is invaluable for people who don't have a good family history

Oct. 25 2013 09:39 AM
Andrew Sleeth from Raleigh, NC

"It's probably blood. You'll probably be fine."

What a hoot! Here you guys are agonizing in extreme speculation about how your molecules might sort themselves out, and the possible significance of it for your remote destinies. But PJ 's coughing up blood right there in the studio, and all Brooke can say is he'll probably be fine.

You gave me my belly laugh for the day on that one. Thanks OTM. Still, you might want to spend a few moments reflecting on your personal priorities this week all the same.

Oct. 22 2013 09:18 PM
Rick Evans from 21701

Obnoxious, disgusting. Yeah, I know radio people are slavishly devoted to sound but did we really need to hear the sounds of coughing up and expelling spit.

Well okay the epidemic "vocal fry" noise Bob complained about is worse so I guess I can take it.

Interesting story.

Oct. 22 2013 08:52 AM

I live in the one state -- Maryland -- where it's entirely illegal to use 23andMe's services. Is this how people become Libertarians? (I kid!)

Having said that, I wish you'd spent more time covering the privacy angle. Yes, my DNA is on everything I touch, but in light of recent disclosures about the cooperation between corporations and various law enforcement and intelligence agencies, having my DNA in a corporate database raises some serious questions.

Suppose Annapolis deigns to let me use 23andMe one day. Suppose further that a future Edward Snowden reveals that the FBI is hoovering up all of 23andMe's records with a national security letter. Will I have the option to completely delete my genetic profile from 23andMe's systems?

Apparently not. Here are the key parts of an email exchange I had with 23andMe Customer Care in July of this year:

--- snip ---
Me: "If at some point in the future I request that you delete my DNA profile from your servers, and such a request did not require 23andMe to violate any laws, regulations, or court orders, would you voluntarily comply with my request?"

23andMe: "When you request that your account be closed, we remove the genetic data from your account. However, this data will be retained in backup copies for an indefinite period of time.

We would be unable to dissociate your genetic information from all existing backup copies. Therefore, we could not accomodate a specific request to delete backup files that may contain your data."

--- snip ---

I appreciated their honesty, but this still gives me pause.

Oct. 21 2013 01:08 PM
Dave from North Texas from North Texas

My family has had Y-DNA, mtDNA and autosomal testing done. 23andMe did the autosomal testing for us. It isn't true, by the way, that such testing only returns results from your mother's side of the family. The results are from many lines of your ancestry. It allows you to connect with cousins from 2nd to 5th cousin relatedness fairly well, if you and the other person tested both got a particular segment passed down, of course.

The medical/health results are very interesting, but one can elect not to see those. Such test results covers lots of territory and more genetic research is being done all the time to add to the over 240 diseases 23andMe presently has in their list. I've also found out some important things about medicines I'm taking. For example, I'm a type 2 diabetic. My test shows that the Metformin I take is a good match for me. I also found out that I'm very sensitive to Warfarin and other such blood-thinners. I made sure to inform my doctor of those risks. Makes me wonder how many people might have bled out after surgery due to such sensitivity not being known.

So, as you guys can see, I am very much a supporter of genetic testing. But my main interest still has to do with ancestral research. Medical/health results are just icing on the cake.

Best of luck to those deciding to jump in. Lots and lots of information for only $99.

Dave

Oct. 20 2013 11:09 PM
Tim from Manhattan

Terrific segment. Really thoughtful and well produced. Made me think more clearly about whether I want to be tested. (I don't). PJ was excellent on the mike. Make him a regular.

Oct. 20 2013 11:53 AM
Chris Nicholson from Knoxville, Tennessee

marion buhagiar from Manhattan,

It's not true that 23andMe " really only traces maternal line." The testing is of your mtDNA, which comes only and entirely from your mother, your Y DNA (if you're male), which comes only and entirely from your father, and your autosomal DNA, which comes from both parents.

23andMe's testing can definitely tell you something about your ethnic ancestry on BOTH sides. Now, the science of determining ethnic heritage is also largely art, imo - reference populations and all that- but you will definitely get the results you're looking for by doing 23andMe testing, and from all sides of your family.

Is there any chance your counselor wanted you to take tests that cost more that $99?

Should you decide to do 23andMe testing - you or anyone else reading - I would appreciate a $10 Amazon card - all you have to do is use my referral link: http://refer.23andme.com/a/clk/ltvBb

Oct. 20 2013 11:49 AM
Anne Seals

One of the points of this test is that you can prevent or minimize some problems. People with a methylation defect can take supplements to support them, which could potentially reduce their risk of a wide range of problems. The test gives you a chance to improve your odds.

Oct. 20 2013 12:04 AM
linda

23andme

Oct. 19 2013 09:05 PM
marion buhagiar from Manhattan

I have a very mixed ethic heritage--to which I added more complexity with the father of my daughter--who then added to the mix. I am interested in genetic testing. A genetic counsellor told me 23andme really only traces maternal line. I read its website and really could not untangle its description of this limitation--if it is a limitation.
I wanted to ask the genetic expert you interviewed but could not make out the name of his website. Can you help> This was a very interesting and informative report!!!!

Oct. 19 2013 08:57 AM
Charles Cates from Central Texas

Brooke must live an interesting life to be nonplussed by people expectorating blood.

Oct. 18 2013 10:48 PM

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