OMG! 23andMe Shares Data with a Pharmaceutical Company!

Genealogy author and educator Thomas MacEntee of DNA Bargains asks that you STOP sharing that 23andMe data sharing article. PLEASE!

Do You Unknowingly Spread Misinformation about DNA and Genealogy?

So at around 6:00 am this morning, when my iPhone turns off “do not disturb” mode, I hear a buzz and I wonder how important the message must be. I look and it is the same panic-inducing article about 23andMe selling your DNA data to a pharmaceutical company! Can I tell you how many times each day I receive a link to this same article (or a similar one)? Or how many times I see it posted and passed around on Facebook?

Here is the headline of the article in question:

Popular DNA Testing Company Signs $300 Million Deal With Big Pharmaceutical Company

What confounds me is how many people who purport to research genealogy get duped into using and sharing unreliable information on social media. Would you approach your family history research the same way? Are you just grabbing the first record you find and adding it to your tree? Are you even checking to see if the information is valid and reliable?

Steps to Analyze Any News Article Posted on Social Media

Here is how I analyze and review any news article that is posted on Facebook or other social media:

Review and Check the Headline

First open the article. Check the headline . . . does it match what appeared in the social media post?  Interestingly, while the article from PrepForThat, a survivalist site, used Popular DNA Testing Company Signs $300 Million Deal With Big Pharmaceutical Company, in social media the headline showed up as GlaxoSmithKline Just Paid $300 Million For Access to 23andMe’s Private DNA Storage. Panic-inducing, your privacy is being violated, and the sky is falling, right?

Here is what happened when I took the URL for the article and posted it in Facebook:

23andMe article at PrepForThat posted at Facebook

Having run several websites and blogs myself, I know that when composing an article, you can put in any “excerpt” or metadata you want in order to manipulate how it appears on Facebook. Click HERE to view the metadata in Google’s Chrome browser:

23andMe article at PrepForThat excerpt and metadata

So this action is intentional and should cause you to begin to doubt not just the reliability of the information in the article, but the website that is posting the information.

Check the Date of the Article

In the case of the PrepForThat article, the date is July 29, 2018 . . . almost six months ago. Not so recent.  Is there a follow-up or more recent article? How many times have you been duped into thinking a celebrity just died after someone posted an article, only to find out they died five years ago? Borrowing a line from early Saturday Night Live days . . . “Francisco Franco is Still Dead!”

Check the Website

So the article in question is posted at PrepForThat with the byline “Survival News.” Doesn’t sound like a DNA website to me, right? So, click the About link and this is what you find:

About PrepForThat site for survivalists

“Started in 2016 as a reaction to the growing global discontent for mainstream politics and news media, is a site dedicated to providing content that aims to make us all a little less fragile. Whether it be political or weather related news, how to survive guides, or content geared towards our parental and libertarian rights, PrepForThat’s multiple writers and contributors ambitiously seeks to improve our lives.

These days, we are challenged at almost every facet of our lives. Financial hardships, natural disasters, and a turbulent political climate all respectively present challenges to ourselves and our friends and family. We target content genres which serve to inform and teach with the ultimate goal being to build an anti-fragile being.

Our content is widely shared across social media. We have a number of prestigious and thoughtful contributors. We adore our readers. Please always feel free to give us any feedback via our contact form or our comments sections.”

So what do you think? There are lots of “code” words in here if you ask me. I try not to bring in my own personal and political bias when evaluating content, but much of what I see in the About section doesn’t sit well with me. While people are entitled to their opinion and to read and write what they like, why would I use a site like PrepForThat for information on DNA and genealogy?

Look at Other Articles on the Website

Always review the first few articles on the website homepage for reliability and accuracy. Are the headlines misleading? Is the content accurate?

Check the URL

Again, based on my own experience as a blogger, I know that the URL can be composed any way you want. So that it aligns with the headline and content of the article . . . or not. In the case of the 23andMe article, it is which I believe is accurate. But for a Starbucks article at PrepForThat? It is Not so accurate and meant to induce clicks.

Search for the Website on Google

Here’s something I always do when checking on a website. I enter the name of the site and the word “bias” as in “PrepForThat bias.” There are a variety of legitimate groups that monitor websites posting articles to determine a) whether the information is accurate, b) what the bias of the website might be, and c) what person or company is running the website.

In the case of PrepForThat, it is not on the radar of sites that track media bias. But always review the Google results (or Bing or Yahoo) to judge for yourself as to any bias involved.

Who Posted or Shared the Article?

Social media can be a great way to interact with friends but there are also lots of foes . . . in the form of TROLLS. Facebook and Twitter are riddled with fake accounts that are set up for the purpose of disrupting the fabric of society and to influence opinions.

Always check the profile of the person or account before sharing an article. Is it a new account? Do they have a profile photo (most spammers and trolls don’t bother completing their profile)? If you are not one of their Facebook friends, would you friend that person? What other content have they posted?

Search for the Article Topic

I usually do a search on Google for a related search term such as “23andMe Glaxo” with the results below. I’ve categorized them based on how, in my opinion, the headline for the same information has been composed and the reliability and accuracy of the article content:

Sensational and Panic Inducing


From 23andMe

From GlaxoSmithKline

Read the Comments on the Article

Now this is a tough one. It is likely that the Comments section is filled with trolls posting unrelated information or comments showing extreme bias. Remember, trolls LIVE in the comments and forums of every website.

But look and see if the author or website admin responds to comments. Or see if there are knowledgeable people posting comments or responding to comments. In the 23andMe article, there is a valuable discussion about opting out of data sharing which is not in the article. And the person replying to comments is representing 23andMe.

23andMe GSK blog post comments

What Does the 23andMe GlaxoSmithKline Article Really Mean?

So this is where you should be employing the same reading comprehension and analytical skills you use in genealogy. Here is my take on the article, broken down into facts and based on my supplemental research:

  • 23andMe is a legitimate and well-known personal DNA testing company.
  • GlaxoSmithKline (GSK) is a well-known pharmaceutical company.
  • 23andMe and GSK signed an agreement whereby GSK would gain access to DNA test result data.
  • 23andMe allows its users to opt out of data sharing and has various user and consent agreements that are part of purchasing a 23andMe DNA test kit.
  • 23andMe and other DNA test kit vendors that share data with outside companies, do so through user consent and strip identifying metadata from the data before it is shared.
  • GSK will be using the 23andMe data to look for genetic trends and patterns for the “research and development of innovative new medicines and potential cures.”
  • Only data from “consenting 23andMe customers” will be used as part of this agreement.
  • If a 23andMe user opts out of sharing their data NOW or after the study has been commenced, they cannot REMOVE their data from the study.
  • GSK made a $300 million equity investment in 23andMe.
  • The collaboration is co-funded on a 50%/50% basis by both companies and “GSK and 23andMe will share in the proceeds from new treatments and medicines arising from the collaboration.”
  • This is not the first time that 23andMe has worked with other pharmaceutical companies or has used its user data for scientific research.
  • There is concern from watchdog agencies that a) the majority of people testing at 23andMe and other vendors don’t understand the policies related to data access and sharing; and b) people who do share their DNA data and become part of a study for pharmaceutical development should either be compensated or have a share of revenue/profits related to any resulting drug.

And my biased opinion of this deal? I don’t think DNA testing companies do enough to alert their users to how their data is being used or emphasize the importance of reviewing the Terms and Conditions before purchasing and/or using a DNA test kit. I do think that sharing data with other companies to develop cures and medicines is a good thing but only if the user is made aware of the data sharing. I also believe that the block chaining technology could be and should be used to track who is using your DNA test data and how it is being used.

If You Can’t Analyze a News Article, Do You Really Have the Chops for Genealogy?

I hate to say it, but the mismatch between news analysis skills and genealogy research skills is a great concern for me. To be honest, if a person posts unreliable news information or regurgitates information such as “The New Facebook Algorithm Only Show You 26 Friends”, I usually don’t rely upon their genealogy data posted.

With genealogy data, do you . . .

  • Consider the source of the information? Who is the author? Who is sharing the information?
  • Review the research methodology used in the article?
  • Review the information to check for source citations if available?
  • Look at the date of the source? Is it the latest and best information for what you are trying to prove?
  • For records, how close is the date of the record to the event you are researching?
  • Have you checked multiple platforms for the same record? Is the record at FamilySearch clearer than the one at Ancestry?
  • How was the record created? Is it an abstract or index? Is it an original record instead of a derivative record?

So, taking the steps above, are you analyzing a source for genealogy data to PROVE that it is reliable? Or are you just collecting any and all information that could potentially topple your family tree and undermine its reliability? Remember, there’s always a Gustave Anjou out there just waiting to share their “reliable” genealogy information with you!


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©2019, copyright Thomas MacEntee. All rights reserved.

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