Ancestry DNA sold to Blackstone

Forums › Off topic › Ancestry DNA sold to Blackstone - Privacy Concerns?

firefuze

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#273191 9-Aug-2020 22:48

I’ve been interested in doing one of these DNA tests for some time now but have held off as I have concerns about potential privacy issues that could unfold in the future. In particular data being misused, sold etc.

Seeing that Ancestry has sold a 75% stake to Blackstone, a US investment firm which among other industries also holds stakes in the health sector.

Seems like this deal went through without much attention, should there be better oversight of companies that hold DNA information about millions, if not billions of people? After seeing these companies change hands, would it now make you think twice before handing them over your genetic identity?

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#2537511 9-Aug-2020 23:37

with that said, how did you think twice about handing it to the previous majority owner?

BlinkyBill

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#2537537 10-Aug-2020 05:35

The bigger issue is, in my opinion, if you take one of these tests, the impact on any insurances you may hold. Insurance claims may be withheld or declined if you fail to disclose to your insurance provider any findings from the test, or indeed even that you took the test.

Ancestry doesn’t purport to provide indications of predispositions for health problems, but the law is sufficiently immature in this area to cause concerns in my mind.

geekiegeek

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#2537542 10-Aug-2020 07:08

I would never feel comfortable handing my DNA over to a private company. You have absolutely no control over what happens to that data in the future.

SirHumphreyAppleby

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#2537557 10-Aug-2020 07:48

geekiegeek: I would never feel comfortable handing my DNA over to a private company. You have absolutely no control over what happens to that data in the future.

Definitely a huge privacy concern, and why I would never have a DNA test done. It's also why I requested my Guthrie Card be returned, in case a future government decided they wanted build a database from blood samples taken at birth.

DNA not only identifies you, but also relatives. Information someone else supplies could potentially affect you. For example, if a close relative has a known genetic condition, an insurer might assess you as a higher risk.

Linux

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#2537567 10-Aug-2020 08:08

I am very active on Ancestry DNA connecting people to unknown biological family, Just completed a search last week for an old school mate and found his biological father but what made it extra special was his biological father was adopted and he had zero idea who his father was and I was able to tell him and connect him with his brother and sisters and tell him about his grand parents and great grandparents

geekiegeek

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#2537571 10-Aug-2020 08:18

Linux: I am very active on Ancestry DNA connecting people to unknown biological family, Just completed a search last week for an old school mate and found his biological father but what made it extra special was his biological father was adopted and he had zero idea who his father was and I was able to tell him and connect him with his brother and sisters and tell him about his grand parents and great grandparents

I don't think anyone is saying that the service they provide isn't valuable, it's just whether the price in potential privacy loss is worth the value provided. In my case, it definitely isn't but others may place a different level of value on privacy. It's the same reason I don't use any social media, the value of the product isn't worth the loss of privacy for me personally.

Linux

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#2537575 10-Aug-2020 08:33

geekiegeek:

Linux: I am very active on Ancestry DNA connecting people to unknown biological family, Just completed a search last week for an old school mate and found his biological father but what made it extra special was his biological father was adopted and he had zero idea who his father was and I was able to tell him and connect him with his brother and sisters and tell him about his grand parents and great grandparents

I don't think anyone is saying that the service they provide isn't valuable, it's just whether the price in potential privacy loss is worth the value provided. In my case, it definitely isn't but others may place a different level of value on privacy. It's the same reason I don't use any social media, the value of the product isn't worth the loss of privacy for me personally.

@geekiegeek Sorry I was walking and typing and was going to add more once I walked into work, But yes privacy is a concern for me I must say

Hope the new owners take it very seriously

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Fred99

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#2537642 10-Aug-2020 09:12

Linux:

Hope the new owners take it very seriously

As an investment opportunity - absolutely.

Facebook with user DNA data would create some interesting new opportunities to profit. You can't really opt out - if a sibling opts in, then they've got most of you anyway.

tripper1000

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#2537651 10-Aug-2020 09:29

I'm no expert, so happy to be corrected, but as a I understand DNA analysis they seldom do exhaustive analysis of DNA samples but only look at the markers they need to for the job at hand - in ancestry's case, to establish identity and family relationships. DNA tests typically, ignore the vast majority of the genetic information. I would expect that the deeper your want to look into DNA the greater the costs.

Commercial companies are pretty predictable - they are driven by money. If the cost is greater than the profit, it simply wouldn't happen. Just because they could in theory analyse all samples for a particular health issue, doesn't mean they would particularly if the profit isn't there.

I wonder if someone in the DNA business can explain the costs and viability of searching DNA on mass for health issues etc as per the concerns above.

geekiegeek

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#2537661 10-Aug-2020 09:50

tripper1000:

I'm no expert, so happy to be corrected, but as a I understand DNA analysis they seldom do exhaustive analysis of DNA samples but only look at the markers they need to for the job at hand - in ancestry's case, to establish identity and family relationships. DNA tests typically, ignore the vast majority of the genetic information. I would expect that the deeper your want to look into DNA the greater the costs.

Commercial companies are pretty predictable - they are driven by money. If the cost is greater than the profit, it simply wouldn't happen. Just because they could in theory analyse all samples for a particular health issue, doesn't mean they would particularly if the profit isn't there.

I wonder if someone in the DNA business can explain the costs and viability of searching DNA on mass for health issues etc as per the concerns above.

What about Ancestry selling your DNA to someone who will profit from a deeper analysis.

SirHumphreyAppleby

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#2537662 10-Aug-2020 09:55

tripper1000:

I'm no expert, so happy to be corrected, but as a I understand DNA analysis they seldom do exhaustive analysis of DNA samples but only look at the markers they need to for the job at hand - in ancestry's case, to establish identity and family relationships. DNA tests typically, ignore the vast majority of the genetic information. I would expect that the deeper your want to look into DNA the greater the costs.

...

I wonder if someone in the DNA business can explain the costs and viability of searching DNA on mass for health issues etc as per the concerns above.

IANAG (I am not a geneticist), but a quick search suggests human DNA consists of around 3x10^9 base pairs. There are four types of bases, each of which pair with another known base, so all combinations could be represented uncompressed in 2 bits and likely compressed much further. Uncompressed, it's only around 715MB of data, which would not be unfeasible to store if it were possible to obtain a complete DNA sequence for everyone.

If you're only interested in certain things, finding it would be quite easy as only a small number of data comparisons would be required. From high school biology, I recall studying DNA linkage. Recombination doesn't occur individually with each of the base pairs. The closer they are on the chain, the more likely they are to be inherited together, so some assumptions can also be made to speed up processing.

afe66

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#2537725 10-Aug-2020 10:42

Sort of related but very interesting in that suggests need dna markers for little more than 2% of white American population to identify nearly any white American.

So no point in asking for that Guthrie card back..

https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.nytimes.com/2018/10/11/science/science-genetic-genealogy-study.amp.html&ved=2ahUKEwjwsZSVmI_rAhWvzjgGHRZoDh0QFjAAegQIAhAB&usg=AOvVaw0QCU2dgpIkOtfoaDbp9OaE&cf=1

Sidestep

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#2537810 10-Aug-2020 11:56

geekiegeek:

What about Ancestry selling your DNA to someone who will profit from a deeper analysis.

Of course they'll sell your DNA! There's nothing surer :)

I'm a user of 23andMe's Health + Ancestry Service.

Every time I do a Google search I balance my desire for privacy against wanting a decent search result.. I'm aware Google, which started as a 'search engine', has morphed into a giant business who's fundamental purpose now isn’t to help me search, but to gather, track and monetise information on my physical movements, thoughts, hopes and desires.

And of course any genetic-testing company's not-too-hidden ulterior motive is to gather your genetic information for it's own goals. By submitting a sample to 23andMe I'm balancing my (and my relative's) genetic privacy against finding out more about my ancestry, and discovering whether I've inherited some hideous genetic defect.

23andMe has an interesting ancestry itself.. and one that, as with all DNA testing companies, shows where your data's likely to end up, and who'll profit from it.

One of the founders of 23andMe, Anne Wojcicki, was for a while, married to Sergei Brin, one of the founders of Google (her sister Susan became Google's marketing manager the following year, helped them profit from their search engine by developing adsense/adwords - and is now CEO of YouTube..)

Google, which was started by Brin and Larry Page in the Wojcicki's garage, owns - with other investors - part of 23/Me, as does research partner GSK (GlaxoSmithKline) who also have a drug targeting + data-sharing agreement with 23/Me.

That arrangement came about partly through GSK's - Chief Scientific Officer and President of R&D - Dr Hal Barron, having professional relationships with Anne Wojcicki and 23/Me executive Richard Scheller, who used with work with Barron at Genentech... Incestuous enough?

GSK's particular interest at the moment is in leveraging 23andMe’s base of consented customers who are aware of their LRRK2 variant status (Parkinson's disease) for their clinical trial recruitment.. among other projects.

Interestingly GSK also has a side partnership with Verily, Alphabet’s life sciences arm, to develop bioelectronics - tiny implantable devices - to treat diseases such as asthma and arthritis.

Since over 80% of 23andMe’s customer base have consented to participate in research, they have quite the genetic and phenotypic database to mine/sell for R&D activities.. they've done it themselves, and GSK (halfway through a 5 year agreement) isn't the first and won't be the last 'partner' they'll sell data to.

So if you make the choice to participate, go into it with your eyes open.

firefuze

510 posts

Ultimate Geek

#2538134 10-Aug-2020 18:41

Goosey:

with that said, how did you think twice about handing it to the previous majority owner?

Honestly hadn't looked at or given the stake holders any thought in the past, wasn't until I saw this recent announcement that it got me thinking. I'm glad I held off buying a kit for now.

MikeAqua

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#2538348 11-Aug-2020 07:34

I've always looked at this sector and thought: -

(A) They are probably cutting all sorts of corners on the processing to save costs, so the results may not be very reliable.

(B) Why would I give such detailed biological information about myself to a private company?

There was good article in the Atlantic last year about the controversy surrounding use of data held by private DNA companies in criminal investigations.

Mike

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