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Even if you haven't personally used their service, if any close relatives have, they already have a sizable amount of information on your genome. They maintain

Even if you haven't personally used their service, if any close relatives have, they already have a sizable amount of information on your genome. They maintain the equivalent of "shadow profiles" (https://en.wikipedia.org/wiki/Shadow_profile https://en.wikipedia.org/wiki/Shadow_profile) as part of their data model for "ancestry" modeling purposes - for example inferring a paternal haplogroup based on data uploaded by genetic relatives. I can only hope at the end of the day their data doesn't end up in the wrong hands. It is their most valuable asset, and this is a way bigger deal than it seems.

tmalsburg2 1y ago
What would even be the right hands in this case? Seems like almost any hands would be the wrong hands.
- smegger001 1y ago
  My ideal would be customers given the option to have it delete sold and profit split with between themselves and 23&me, or anonymised and donated to the human genome project.
- mrweasel 1y ago
  There basically aren't any. Almost any entity that would want to buy the company should by definition not be allowed to do so. The ideal solution would be for all data to be deleted before a sale. If anyone would want to buy 23andMe without the collected data then that's perfectly fine.
yoaviram 1y ago
Sounds like it's time to send 23andMen a GDPR/CCPA/etc. data deletion request. Here's an easy way to do it: https://yourdigitalrights.org/d/23andme.com https://yourdigitalrights.org/d/23andme.com
michaelt 1y ago
I don't like 23andme, but don't the shadow profiles sorta implicitly exist whenever you're working with DNA data? If their DNA test can recognise first cousins, then they've got a recognisable DNA profile for each user's parents, grandparents, children and so on.
- nomdep 1y ago
  So does the government and probably ancestors.com … what’s the big problem here?
__alexs 1y ago
Your genome can be scavenged from the air. It is not information we are capable of keeping private.
- MrMcCall 1y ago
  But can it be isolated from the myriad of life floating around? I doubt that specificity would be economically profitable. The police did catch the Golden State Killer by scavenging a used coffee cup or somesuch, however.
  - __alexs 1y ago
    Often it can. And even in cases where currently it can't the technology will improve, costs will come down.
    - MrMcCall 1y ago
      Yeah, eventually, but it may be a while.
      - __alexs 1y ago
        DNA sequencing costs for a full human genome have outpaced Moore's law. I wouldn't bet on it.
        dekhn 1y ago
        Sequencing costs dropped dramatically in a window that started when sequencing was done highly inefficiently. That gave folks the false impression that DNA sequencing would continue to halve in price every ~X years. The NIH occasionally updates this chart (note: Y axis is log scale) https://www.genome.gov/about-genomics/fact-sheets/DNA-Sequencing-Costs-Data https://www.genome.gov/about-genomics/fact-sheets/DNA-Sequen... You can see there was a dramatic reduction in costs from 2008 to 2015, as several vendors released several substantial technology improvements, and a slow improvement from 2015 to now, but it's roughly flatlined, and there isn't much investment in developing new technologies now. To the surprise of many, having enormous amounts of genomic data hasn't been the clear-cut improvement to human health, although there are some exceptions (especially cancer identification and personalized treatment). If we truly wanted to, we could spend capital and build out the sequencing, compute, and storage infrastructure to sequence every person on the planet at least once at 50X coverage, and store the data in perpetuity.
bryanmgreen 1y ago
New adoption perk is ability to avoid DNA based shadow profiling (given no voluntary self sharing of DNA and current ID, of course)
citadel_melon 1y ago
I am not as worried if this data gets out or not. I think there are negative externalities if the data is sold to insurance firms — who can use the genomic information in litigation and policy rejections — or if the data is sold to some sort of powerful, pro-eugenics political organization. The insurance externalities likely can be mitigated with minimal legislation (protecting consumers in a similar manner to how we protect those with pre-existing conditions) and it is reasonable to assume pro-eugenics political groups wouldn’t be any less dangerous without this genomic data available. Thus, I struggle to see how this data changing hands would be especially detrimental to society. One could contend a moral dilemma will arise from future developments in cloning, but would it? We already have clones in the form of identical twins, and their existence does not seem to create many, if any, especially problematic moral dilemmas. Maybe people are worried that society will start cloning celebrities and famous intellectuals instead of having babies more naturally — creating a world of designer babies where the diversity of thought and talent shrinks in a “tragedy of the commons”-esque dilemma — but I don’t think this is people’s issue because most people frame their qualms as more of a personal privacy issue. Moreover, designer babies issue I describe would likely become an issue with or without cloning. There are issues that come to mind regarding genomics in commerce — such as the ethics and market incentives of patenting certain genomic patterns — but again I don’t see how this 23andMe data changing hands make this issue any more pressing than before. On the other hand, my instinct (which I have learned to never blindly trust) is that making the data more widely available may make it cheaper and easier for researchers to make impactful discoveries. Therefore, my biggest worry with the change of ownership is that the new owners may keep the data behind a bigger wall.
- mort96 1y ago
  Look at the current political situation in the US. Do you think there's a lot of legislation protecting consumers from insurance firms any time soon?
  - johnnyanmac 1y ago
    Fortuantely my state is still pretty good about this, despite the federal administration throwing consumers by the wayside.
Spacecosmonaut 1y ago
I'm a genetic engineer at a large pharma company. Genetic engineering of human model systems is my specialty. If I were a malicious actor, I could not do anything useful with the genome of any one person. Most peoples genomes are boring and at best sway the predisposition for disease by a modest degree. Exposing infidelity is honestly the best I can come up with.
- shreyshnaccount 1y ago
  i always thought that its valuable when you have enough data from an insurance pov? is that a myth?
  - Spacecosmonaut 1y ago
    For the vast majority of people lifestyle is much more deterministic than genetics. There are a few exceptions causing relatively deterministic adult onset diseases: Huntington, APOA4 homozygosity, FAP, BRACA mutants. These are rare however.
    - 1dom 1y ago
      > For the vast majority of people lifestyle is much more deterministic than genetics. How much of lifestyle do you think is determined by genetics, if any, and how much of that link do we currently understand? I feel the concern around genetic data privacy has normally been the risk of unknown future stuff, rather than any current known vectors. I'm not saying it's a legitimate fear, but I don't know if it's one that is placated with "we can't currently do anything bad".
      - Spacecosmonaut 1y ago
        The impact of lifestyle is undeniable and large. Good genes will not protect your body from alcoholism. And if I were a betting man, I would bet against determinism emerging from a better understanding of combinatorial genetics. I do think over time we will get a clearer picture of risk predisposition based on your entire genetic profile. However, I believe that genetic predisposion will remain a relatively small contributor for most disease states.
vintermann 1y ago
If 23andMe makes "shadow profiles", it would necessarily be for common ancestors, probably long dead. They can't see "down" into the genetic tree at all - whether great-grandma had 1 child or 13 they'll never know until the descendants take tests. But also, if 23andMe does this, they are short-changing their genealogy customers. One of the main things a genealogy customer would like to know about a match is if they're on the maternal side, paternal, or both (more common than you'd think, and mostly not because your parents are related). 23andMe, from what I read, does not do this - and that suggests that they're not getting much out of those shadow profiles.
SecretDreams 1y ago
> I can only hope at the end of the day their data doesn't end up in the wrong hands. Narrator: it ended up in the wrong hands

tmalsburg2 1y ago

What would even be the right hands in this case? Seems like almost any hands would be the wrong hands.

smegger001 1y ago
My ideal would be customers given the option to have it delete sold and profit split with between themselves and 23&me, or anonymised and donated to the human genome project.
mrweasel 1y ago
There basically aren't any. Almost any entity that would want to buy the company should by definition not be allowed to do so. The ideal solution would be for all data to be deleted before a sale. If anyone would want to buy 23andMe without the collected data then that's perfectly fine.

yoaviram 1y ago

Sounds like it's time to send 23andMen a GDPR/CCPA/etc. data deletion request. Here's an easy way to do it: https://yourdigitalrights.org/d/23andme.com https://yourdigitalrights.org/d/23andme.com

michaelt 1y ago

I don't like 23andme, but don't the shadow profiles sorta implicitly exist whenever you're working with DNA data? If their DNA test can recognise first cousins, then they've got a recognisable DNA profile for each user's parents, grandparents, children and so on.

nomdep 1y ago
So does the government and probably ancestors.com … what’s the big problem here?

__alexs 1y ago

Your genome can be scavenged from the air. It is not information we are capable of keeping private.

MrMcCall 1y ago
But can it be isolated from the myriad of life floating around? I doubt that specificity would be economically profitable. The police did catch the Golden State Killer by scavenging a used coffee cup or somesuch, however.
- __alexs 1y ago
  Often it can. And even in cases where currently it can't the technology will improve, costs will come down.
  - MrMcCall 1y ago
    Yeah, eventually, but it may be a while.
    - __alexs 1y ago
      DNA sequencing costs for a full human genome have outpaced Moore's law. I wouldn't bet on it.
      - dekhn 1y ago
        Sequencing costs dropped dramatically in a window that started when sequencing was done highly inefficiently. That gave folks the false impression that DNA sequencing would continue to halve in price every ~X years. The NIH occasionally updates this chart (note: Y axis is log scale) https://www.genome.gov/about-genomics/fact-sheets/DNA-Sequencing-Costs-Data https://www.genome.gov/about-genomics/fact-sheets/DNA-Sequen... You can see there was a dramatic reduction in costs from 2008 to 2015, as several vendors released several substantial technology improvements, and a slow improvement from 2015 to now, but it's roughly flatlined, and there isn't much investment in developing new technologies now. To the surprise of many, having enormous amounts of genomic data hasn't been the clear-cut improvement to human health, although there are some exceptions (especially cancer identification and personalized treatment). If we truly wanted to, we could spend capital and build out the sequencing, compute, and storage infrastructure to sequence every person on the planet at least once at 50X coverage, and store the data in perpetuity.

bryanmgreen 1y ago

New adoption perk is ability to avoid DNA based shadow profiling (given no voluntary self sharing of DNA and current ID, of course)

citadel_melon 1y ago

I am not as worried if this data gets out or not. I think there are negative externalities if the data is sold to insurance firms — who can use the genomic information in litigation and policy rejections — or if the data is sold to some sort of powerful, pro-eugenics political organization. The insurance externalities likely can be mitigated with minimal legislation (protecting consumers in a similar manner to how we protect those with pre-existing conditions) and it is reasonable to assume pro-eugenics political groups wouldn’t be any less dangerous without this genomic data available. Thus, I struggle to see how this data changing hands would be especially detrimental to society. One could contend a moral dilemma will arise from future developments in cloning, but would it? We already have clones in the form of identical twins, and their existence does not seem to create many, if any, especially problematic moral dilemmas. Maybe people are worried that society will start cloning celebrities and famous intellectuals instead of having babies more naturally — creating a world of designer babies where the diversity of thought and talent shrinks in a “tragedy of the commons”-esque dilemma — but I don’t think this is people’s issue because most people frame their qualms as more of a personal privacy issue. Moreover, designer babies issue I describe would likely become an issue with or without cloning. There are issues that come to mind regarding genomics in commerce — such as the ethics and market incentives of patenting certain genomic patterns — but again I don’t see how this 23andMe data changing hands make this issue any more pressing than before. On the other hand, my instinct (which I have learned to never blindly trust) is that making the data more widely available may make it cheaper and easier for researchers to make impactful discoveries. Therefore, my biggest worry with the change of ownership is that the new owners may keep the data behind a bigger wall.

mort96 1y ago
Look at the current political situation in the US. Do you think there's a lot of legislation protecting consumers from insurance firms any time soon?
- johnnyanmac 1y ago
  Fortuantely my state is still pretty good about this, despite the federal administration throwing consumers by the wayside.

Spacecosmonaut 1y ago

I'm a genetic engineer at a large pharma company. Genetic engineering of human model systems is my specialty. If I were a malicious actor, I could not do anything useful with the genome of any one person. Most peoples genomes are boring and at best sway the predisposition for disease by a modest degree. Exposing infidelity is honestly the best I can come up with.

shreyshnaccount 1y ago
i always thought that its valuable when you have enough data from an insurance pov? is that a myth?
- Spacecosmonaut 1y ago
  For the vast majority of people lifestyle is much more deterministic than genetics. There are a few exceptions causing relatively deterministic adult onset diseases: Huntington, APOA4 homozygosity, FAP, BRACA mutants. These are rare however.
  - 1dom 1y ago
    > For the vast majority of people lifestyle is much more deterministic than genetics. How much of lifestyle do you think is determined by genetics, if any, and how much of that link do we currently understand? I feel the concern around genetic data privacy has normally been the risk of unknown future stuff, rather than any current known vectors. I'm not saying it's a legitimate fear, but I don't know if it's one that is placated with "we can't currently do anything bad".
    - Spacecosmonaut 1y ago
      The impact of lifestyle is undeniable and large. Good genes will not protect your body from alcoholism. And if I were a betting man, I would bet against determinism emerging from a better understanding of combinatorial genetics. I do think over time we will get a clearer picture of risk predisposition based on your entire genetic profile. However, I believe that genetic predisposion will remain a relatively small contributor for most disease states.

vintermann 1y ago

If 23andMe makes "shadow profiles", it would necessarily be for common ancestors, probably long dead. They can't see "down" into the genetic tree at all - whether great-grandma had 1 child or 13 they'll never know until the descendants take tests. But also, if 23andMe does this, they are short-changing their genealogy customers. One of the main things a genealogy customer would like to know about a match is if they're on the maternal side, paternal, or both (more common than you'd think, and mostly not because your parents are related). 23andMe, from what I read, does not do this - and that suggests that they're not getting much out of those shadow profiles.

SecretDreams 1y ago

> I can only hope at the end of the day their data doesn't end up in the wrong hands. Narrator: it ended up in the wrong hands