Former CEO wants to buy it, but the fate of its customers' genetic data is unclear.
See full article...
See full article...
Genetic testing company 23andMe declares bankruptcy
- Thread starter JournalBot
- Start date
I agree that individual rights matter and people should be entitled to having bloodwork and genetic screenings done. However, genetic information reveals much more information than what could be considered public records. We don't even know all that we're giving away.
We're talking about the foundational biological material that makes us who we are- not just our birthdates and previous addresses.
I don't know how to write meaningful legislation to protect from abuse, but I staunchly believe that individual genetics should not be grouped into the same classification as public records. This is the type of information that could be used to develop biological weapons to target specific groups of people.
Upvote
31
(31
/
0)
Dear 23 and me, please delete all data with markers indicating right-handedness as that is my personal data.
Sincerely, a right-handed person.
Upvote
-19
(3
/
-22)
handyrandyrc
Seniorius Lurkius
Full disclosure - I work for a genetics company. I'm not overly worried. For the very few assays performed on each sample in the name of 'genetics for fun,' the usefulness of the data is quite limited. I'm sure there is some scientific value, and some companies will bid on it. Patient samples are consumed by their lab process. Since the assays they targeted are things like, "You might like the taste of cilantro," or "you have blue eyes," it's core usefulness is familial matching.
Upvote
26
(27
/
-1)
Upvote
5
(5
/
0)
Upvote
7
(7
/
0)
But why would they go through all that effort when they can just make shit up whenever or whereever that they want? A target is going to be a target based on whim, it's not like you're talking about people who show any indication to have a use for actual facts.
Upvote
20
(21
/
-1)
Best to assume that if the company goes full asset liquidation bankruptcy, the data sets will be sold to the highest bidder and any privacy policies won't survive the sale. Especially if the buyer is a non-US entity.
Upvote
14
(14
/
0)
sigmasirrus
Ars Scholae Palatinae
Delete just means hidden from the end user but still on the server, prob.
Upvote
10
(10
/
0)
On the flip side, if any of your relatives would benefit from some time in the hoosegow, donating your DNA is a way to move the process along.
Upvote
17
(17
/
0)
sigmasirrus
Ars Scholae Palatinae
That’s exactly how it works in many European countries. I was told be careful taking photos as a tourist since the view there is that I don’t have the right to take identifiable photos of people.
Upvote
24
(25
/
-1)
Ea-nasir is still hoping that the one star rating he got on Ur Marketplace nearly 4000 years ago would similarly disappear due to bit rot.
Upvote
24
(24
/
0)
I stayed as far away from services like this as I could, but a close blood relative went and took a test from them.
Welp, 99.99% of my DNA is going to the highest bidder.
Welp, 99.99% of my DNA is going to the highest bidder.
Upvote
6
(7
/
-1)
Probably not, be it official storage elsewhere or prior sales or data scraping agreements, or unofficial ones. And of course the government has continued to argue in cases like this or with zero-day exploits and other such things that even when the law would otherwise bar them, they can "commercially acquire" information for parallel construction or their undisclosed activities.
If the courts are failing to reign this stuff in, then we need more explicit legislation to do so. But good luck to us all with that..
Upvote
4
(4
/
0)
Whilst this specific scenario didn't occur to me, I never ever once felt the desire to use any of these DNA sites on the grounds that I would be putting extremely sensitive immutable personal data in the hands of a business that was only as secure as it's least secure subsystem and once that particular genie was out of the bottle there would be no going back.
Maybe I should have also thought of that idea that the company could go bust and all that data goes to the highest bidder, but even though it didn't occur I still feel glad that my scepticism was well founded.
Maybe I should have also thought of that idea that the company could go bust and all that data goes to the highest bidder, but even though it didn't occur I still feel glad that my scepticism was well founded.
Upvote
6
(6
/
0)
enlightened.doggo
Ars Scholae Palatinae
The Freakonomics interview with Anne Wojcicki made it pretty clear that there was never a plan for profitability with 23andMe. This was a lifestyle business from the beginning.
Upvote
15
(15
/
0)
I think it is fair to say that there should be a law that protects the consumer in these cases, instead of their data becoming an asset to be sold off.
Upvote
12
(12
/
0)
That's a fair point. Facts really don't matter to them. But, they will sometimes, when facts are available that provide them with what they want, selectively use those facts.
Upvote
8
(8
/
0)
I've often wondered about this. What is the worst thing people can do with my genetic data?
I would imagine most companies interested in genetic data don't particularly care about my specific genetic makeup. But they are interested in the genetics of populations (to say better target/guide research in medical therapeutics). Otherwise, maybe in the future, insurance companies will require genetic screening before offering health/life insurance ... but they currently already require health screenings anyways (for things like private life insurance). But an insurance company wouldn't need this data from a company like 23&me, they would just require it as a term of coverage.
I suppose if I worked in something related to national security or espionage, then I'd like to stay as anonymous as possible, but it's not hard to get genetic material from a specific target.
Upvote
0
(2
/
-2)
Yeah I assume they would mean corporate speak for "delete" would be the same for "unlimited"
Upvote
7
(7
/
0)
OptimusP83
Ars Praefectus
This. None of these people need a shred of credible evidence to jump on any old bandwagon with their
Upvote
0
(4
/
-4)
Theses companies slap a "thrown away" sign on the kitchen waste bin, without actually moving the trash bag. The resulting stench is entirely predictable. In any sane system this behavior would get appropriate punishment. But this is the U.S. where insanity is the norm.
Upvote
3
(3
/
0)
That's some very weaselly language, I note. Doesn't make any guarantees at all that your data will be comprehensively, completely and irrevocably removed for every data storage mechanism they may have stored it on.
Upvote
2
(4
/
-2)
On the site you can request it be deleted. The odds of them actually deleting it I think are slim. I requested deletion and also put nonsense for any potentially identifiable information. This presumes they don't keep a history of that information. I have zero faith in the CEO to do right.
Upvote
3
(3
/
0)
"Hoosegow"...Wow...there's a word I haven't heard in a very long time. It was my grandfather's favorite term for jail. He died in 1981. Miss you much grandpa.
Upvote
19
(19
/
0)
Also from the link:
IOW, everything hinges on the privacy statement ... which they can change any time they like. It's all weasel-words. There are no guarantees at all.
Upvote
3
(3
/
0)
Agree. I think it's pretty safe to assume no data is ever hard deleted, but soft deleted instead. You can't see your data, but it continues to be sold.
Upvote
4
(4
/
0)
Thing about DNA is that like fingerprints you leave it everywhere. If somebody really wants yours, it's not hard to get. The Golden State Killer, mentioned above, left his on a discarded tissue which the police picked up.
Upvote
12
(12
/
0)
Anti Jimmy
Ars Centurion
I don't believe it's a sense of entitlement not to be observed, so much as a sense of fear of the sheer scale of that observation nowadays. The novel 1984, for example, is in part predicated on exactly that fear, and it was written decades before such massive real-time data collection on a population was even remotely practical for governments, much less companies.
Upvote
14
(14
/
0)
XSportSeeker
Ars Scholae Palatinae
Soon: suspicious ramp up in prices of insurance, drugs, and treatments for certain types of gene related diseases.... again. Plus people being targeted with drug ads for a genetic disease they didn't even know they had.
Such a wonderful world we live in
Such a wonderful world we live in
Upvote
1
(5
/
-4)
I was told that while you can't use this data to adjust health insurance you can use it to adjust life insurance policies. If this is true, the most logical buyer would be someone life insurance adjacent.
Hopefully this is not the case.
Hopefully this is not the case.
Upvote
1
(2
/
-1)
I suspect that will be roughly as helpful as Ashley Madison's "paid delete" option was.
If you're not familiar: Ashley Madison was--and still is, surprisingly!-- a niche dating site dedicated specifically to adultery. Paying AM $20 to delete your account resulted in a "1" being entered into a column in AM's database. The 1 in that column indicated that you'd paid to be deleted.
Oh, and the transaction was entered into a financial transaction table... Which therefore tied your real name, address, and credit card number to your "deleted" account, all of which became visible when the site was later hacked.
For an INCREDIBLE number of people, that was the only financial transaction they ever made, and therefore not only did the paid delete not actually help them, it was literally the only reason those people could BE directly and irrefutably tied to their account when the site did in fact get hacked and the database dumped to the public.
This isn't a precise analogy, obviously. But if privacy is your main concern, it might still be worth asking not only "will giving these people more money actually help" but also "will tying fresh real world financial data to these results make it worse?"
Upvote
29
(29
/
0)
Beyond corporate data, there's religious. The mormons have been into genealogy and genetics for decades. Back in the 80s they paid Control Data millions for a super computer and software services for those ends. They were heavily involved in Ancestry.com, and likely continue to hold shares via Blackstone Group. I would not be shocked if they picked up the remains of 23 and me.
Upvote
9
(9
/
0)
Even if you said to delete your data. It's probably still in the system used in other ways. Lets say they do delete you name and address. Your DNA will probably still be there as some kind of account.
I did one using Ancestry. But the kit i used was bought at a retail store and not tied to my bank information. Along with i used a fake name and email not related to me. But i assume my genetic information will live on in the system.
I did one using Ancestry. But the kit i used was bought at a retail store and not tied to my bank information. Along with i used a fake name and email not related to me. But i assume my genetic information will live on in the system.
Upvote
2
(2
/
0)
I dunno, man. Are you saying that people didn't know what DNA was, and only learned later? Where were they in high school? Did they not read the mountain of articles published at the time warning about exactly these kinds of IP issues?
I can understand taking the position "blood just comes out of me, whatever, it's not a secret." Whether I agree with that stance is irrelevant; the point is that it's consistent. What I don't understand is not caring about privacy of your genetic data then but being outraged about it now.
Nothing changed. The issues now are the same ones that already existed when the service launched, and were already addressed pretty directly by a mountain of different articles. For example, this Scientific American piece from twelve years ago: https://www.scientificamerican.com/...fying-but-not-for-the-reasons-the-fda-thinks/
Upvote
13
(13
/
0)
You know what’s fun? When your wife buys test kits for all the nieces and nephews for Christmas and one of the nieces finds out that her dad isn’t her dad and her brother and sister are now your half brother and sister.
Upvote
35
(35
/
0)