privacy issue with 23andMe tests

+4 votes
233 views
Just came across this item, relating how 23andMe are signing deals with pharma companies.  

https://prepforthat.com/23andme-signs-300-million-deal-with-glaxosmithkline/
in The Tree House by Danielle Liard G2G6 Pilot (657k points)

3 Answers

+4 votes
Precisely why I chose not to use 23 and me for my DNA tests.

Also why I did not chose Ancestry as well. They do the same thing.
by Robynne Lozier G2G Astronaut (1.3m points)
Robynne,

Who did you go with?

Most likely Family Tree DNA. It is gaining in popularity. From one of the Help pages:

Unless one of them is having a sale (it's worth clicking over to check), we'd usually recommend AncestryDNA.

  1. AncestryDNA has by far the largest customer base, i.e. the most potential matches.
  2. Most of their customers are interested in genealogy, whereas on 23andMe the test-takers may be more interested in health.
  3. Their customers are more likely to have a family tree that's on the site.
  4. Ancestry is the easiest to use.

That said, Ancestry does not have the most powerful tools. If you feel serious about genetic genealogy, go straight to our friends at Family Tree DNA.

I did go with FT DNA actually, but later transferred my results to Gedmatch and My Heritage. My mother got her test from My Heritage.

I am currently waiting on results from 2 new relatives who both did DNA tests from My Heritage.

I really like My Heritage - especially the ability to do cheek swabs. No gross spitting into tubes.

The My Heritage database is growing quite fast and IMO, it is much more global than Ancestry's database.
+9 votes

I feel sad when I read stories like this, and see the fear-mongering and paranoia building efforts.  There is NO effort at all by the author or any of the article commenters to seek the facts, to find out the truth of the matter.  We need to be level-headed, and make sure we are getting ALL the facts, not just those aligned with particular agendas.

I do not see this as a bad thing, rather a very good thing.  Certainly there can be abuses, and when identified they need correction, but in the current privacy climate ... would be a very bad business decision.  If you are a small or big company, wanting to produce products to fight and cure disease, the ONE thing you need most right now is all the DNA data you can gather.  Contracts like these are EXACTLY the right thing to pursue.  And from all accounts, there's no personally identifying info included, just aggregate info.  That means no names or contact info included.  And as to whether it's right or wrong to participate - it's your opportunity to help in the fight to cure cancer and other diseases, with practically no risk to yourself.  I'm not an all-knowing expert, but I have NEVER heard yet of damage to anyone from offering their DNA for research, and I personally don't see any privacy risks either, currently.  The fears offered by others are simply conjecture, expecting worst case scenarios, and the chances seem incredibly remote.  It seems far more likely that people will experience other adverse events, such as hacked financial info, traffic accidents, natural disasters, etc.

This particular article is followed by comments from people who apparently lean to conspiracy theories, anti-vaccine proponents, and quackery.  They seem especially prone to the attitude of "'they' are out to get you".  When something or someone is attacked, always look for the other side of the story, and get all the facts you can.  A similar but more balanced story is in another G2G thread.

by Rob Jacobson G2G6 Pilot (137k points)
It's a question of full disclosure to the people taking the test with 23andMe, and just DNA samples will not assist pharmaceutical companies much, without some sort of identifier to link to known diseases, it gives nothing.  And 23andMe got barred from doing medical type DNA testing at some point, not sure if that is still in force or not.
+3 votes
Yes I did my DNA test with them. They sent an email to all current users. I updated my profile to remove permission to share my data.
by Virginia Miltrup G2G3 (3.0k points)

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