60 Minutes Episode on Home DNA Testing and Genealogy Testing #dna


Jan Meisels Allen
 

 

On January 31, 2021 60 Minutes had an episode on Genealogy DNA Home testing and countries vying for your DNA:

https://www.cbsnews.com/news/dna-genealogy-privacy-60-minutes-2021-01-31/

They discuss the danger about privacy and the value of our data that we provide to the companies who in turn may transfer to other third parties.

 

Their 60 Minutes Overtime also did an episode Genealogy Testing

https://www.cbsnews.com/news/at-home-genealogy-testing-risks-60-minutes-2021-01-31/

In this episode the CEO of 23andMe is interviewed.

 

In full dislsoure I have had my DNA testing done at 4 of the DNA companies and have no affiliation with any of the companies other than as a client who had my DNA testing there.

 

Jan Meisels Allen

Chairperson, IAJGS Public Records Access Monitoring Committee

 


jbonline1111@...
 

I have the privacy concerns that this 60 Minutes episode highlighted.  For that reason, I have not had my DNA tested and would not ask any family member to do so. 

Whether one should be paid for one's DNA data when it is sold to other companies or used for any research, anonymized or not, is a separate issue. My view is that if the company makes money on the data, the person who owns that data should be paid. 
--
Barbara Sloan
Conway, SC


Jx. Gx.
 

It is very tempting to give away your DNA in exchange for a list of potential distant relatives and for data that purports to shown where one's ancestors may have once dwelled. 

The 60 Minute episode only touched on some of the risks associated with giving out one's DNA.  Once it is given you have no control of who has access to it and how it can be used. It is likely to stay around forever and we can't even begin to imagine how it can be used for nefarious ways in the future, especially if it is linked to other bits of data about ourselves gleaned from other sources. I had to laugh when the CEO of 23andMe said her company has policies in place to protect how the DNA data is stored and used, but then admitted that all companies are susceptible to hackers.  Policies are not laws and can change the minute a new CEO is installed or if the company is bought by another firm that has no hesitation about selling your DNA. " CAVEAT EMPTOR (Buyer Beware). 

Jeffrey Gee
Arizona, USA


Debra Katz
 

I simply can't jump aboard the "panic about dna data privacy bandwagon", even though that seems to be a lonely road to travel these days.  I have three key comments in regard to the 60 minutes programs....
1) there is lots of talk about dangers of "big data" and "third party use of the data"---but the "danger" described isn't about anything dangerous to you physically, mentally or in terms of your freedom etc.  The "danger" is all about the idea that someone might profit from your data (either via using it for research or selling it to others).  So the issue here is money not danger.  [And when you are saved by a drug or therapy developed from DNA data analysis, you might not be so upset that your data was used.]
2) most testing companies, and all the ones I've ever used (FTDNA, 23andMe, Geno 2.0, Helix, DeCodeMe, LivingDNA, Nebula Genomics, Ancestry, to name a few.) have privacy protections in place and you have to "opt in" for your info to be used for research or law enforcement. 
3) I think the real "danger" we face is that fears about DNA testing will inhibit people from doing and sharing their DNA results for genealogical purposes and we will lose the best window into our history that has come along....EVER. 
I also found throwing in the "specter" of "the evil communist China" taking our data and dominating our healthcare was really over the top.  What is their evil plan?  Use our DNA to create a genetic Godzilla?  Devise a special disease bomb that targets American but Chinese will be immune? The "horror" they describe in the program is that Chinese will be our "dealer", pushing low-cost, highly-effective health care we won't be able to resist.  Hmmm...that sounds just awful.  And if we don't like that, we could consider developing low-cost, highly-effective health care ourselves...and we don't need their data to do it....we have plenty of our own.   (The example given of Chinese use of DNA data against the Uighers proves my point in that 99% of the ethnic cleansing actions they describe are not DNA-related so DNA data is not the big problem...China's desire to eliminate an entire ethnic group is the problem.)  Should there be reasonable regulation of DNA data?  Of course!  Just like there are regulations about all of our medical data.  Ok, off my soapbox...

Deb (Debra) Katz
Pacific Beach CA USA


JoAnne Goldberg
 

I did not see the episode, but I am addressing privacy issues in general
(and building on Deb's excellent points):

* Even if you opt to have your individual DNA shared, no one will be
able to, for example, access your bank account or use your credit card.
No one is going to clone you.

* The affordability and accessibility of DNA testing -- and the
resulting big data -- are having a profound impact on medical research.
Someday you will be able to get  genomics-guided precision medicine,
treatments and medications specifically customized to your DNA.

* Governments are quietly assembling their own DNA databases. In the
United States, for example, the FBI manages a federal DNA database that
might already have your DNA.  Tools for DNA capture and analysis are
readily available; we can manage them to protect people but they are not
going to disappear.

On the plus side, taking one of the reputable tests (and not all of them
are) can help you solve family mysteries and track down relatives as
well as give you insights into potential medical conditions.

JoAnne Goldberg
--
JoAnne Goldberg - Menlo Park, California; GEDmatch M131535
BLOCH, SEGAL, FRIDMAN, KAMINSKY, PLOTNIK/KIN -- LIthuania
GOLDSCHMIDT, HAMMERSCHLAG,HEILBRUNN, REIS(S), EDELMUTH, ROTHSCHILD, SPEI(Y)ER -- Hesse, Germany
COHEN, KAMP, HARFF, FLECK, FRÖHLICH, HAUSMANN,  DANIEL  -- Rhineland, Germany

 


Raina Accardi
 

This 60 minutes report was such horrible fear mongering. Showing video of tracking software with boxes floating over peoples faces as they walk through airports! I completely agree with Deb and JoAnne. What is this "danger" they kept referring to? I was hearing alot of "the sky is falling" but very little actual information. They finally got to the point and said that if the US wants to be a leader in genetic science and medicine, we need to invest in it more than we are. Yup.

I already had my DNA taken by my doctor, which is now in a database. I am not allowed to access it. At least with the genetic genealogy testing sites I can do something with it. And I am not worried that the genes for my hazel eyes might be copied into a designer baby someday.
--
Raina Accardi
Saugerties, NY

ACCARDI Castellammare del Golfo, Sicily; GEVIRTZMAN Kobylin, Poland; JESINOWITZ/YESNOWITZ Mszczonów, Poland; FELSENSTEIN Parysów, Poland;; GUTTWOCH/GOODMAN, ZISSERMAN Volchin, Belarus; BUSHMITZ Vysokaye, Belarus; TRAUB Rivne, Ukraine or Kovno, Lithuania; JANOVSKY Zhytomyr, Ukraine; WEISMAN or ROSENBERG Ukraine


Debra Katz
 

On Mon, Feb 1, 2021 at 12:58 PM, Jx. Gx. wrote:
Once it is given you have no control of who has access to it and how it can be used.
I do not think there is any facts or evidence to back up this statement, which at least in my 20+ years of experience is quite false. (If you have such evidence, feel free to contact me directly at dnadeb@... as I know this forum is not the place for extended debate.)  I suppose there may be differences in privacy policy depending on what organization you give your DNA to, but any reputable lab---certainly the reputable ones that do genetic genealogy testing--gives you complete control over your DNA and how it can be used. 

If you do not want to do any DNA testing, don't.  But please do not make sweeping statements that will frighten others needlessly.

Debra Katz
Pacific Beach CA USA