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China’s gene giant harvests data from millions of women worldwide

207 points by emptybits 5y ago

advael 5y ago
I see kind of a silver lining here, in that it has the potential to get US-based lawmakers to care about mass data-harvesting enough to make some laws about it. I imagine that privacy laws are easier to get through congress if the perceived threat is a foreign government rather than a home-grown tech giant
- FpUser 5y ago
  They'll just slap sanctions on that company / government to prevent gathering of the info from the US population. Also if such data offers verified massive advantage as they say the US might be more inclined to instead repeal / weaken privacy laws to keep up with China.
bobsoap 5y ago
> BGI said in a statement it “has never been asked to provide – nor provided – data from its NIFTY tests to Chinese authorities for national security or national defense security purposes.” ...as if those two very specific use cases are the only possible "reasons" authorities can ever come up with when they want the data.
ivanhoe 5y ago
Yeah, this is exactly how the rest of the world feels about US-based companies harvesting dna data for years...
- dragonelite 5y ago
  Find and replace China with US and reality still makes sense. Then the US expects the rest of the world to follow their rule based order, where no one knows what the freaking rules are except rules for thee but for me(US).
  - eru 5y ago
    Most American rules don't apply overseas. Eg they can spy on foreigners all they like.
    - lucian1900 5y ago
      And they have a special rule that they’ll invade The Hague if US war criminals are ever tried there. All those presidents and generals and spooks are safe from justice.
      - Vinnl 5y ago
        You're talking about the The Hague Invasion Act: https://en.wikipedia.org/wiki/The_Hague_Invasion_Act https://en.wikipedia.org/wiki/The_Hague_Invasion_Act Just a note, the US doesn't need permission from the Netherlands to invade them, of course. However, as I understand it, usually the US president needs permission from Congress before deciding to invade another country. In this case, Congress has given permission in advance to invade the Netherlands if the ICC tries a US citizen.
        eru 5y ago
        > However, as I understand it, usually the US president needs permission from Congress before deciding to invade another country. Only for declaration of war. The US hasn't declared war on anyone in since WWII. See https://en.wikipedia.org/wiki/Declaration_of_war_by_the_United_States https://en.wikipedia.org/wiki/Declaration_of_war_by_the_Unit...
    - akudha 5y ago
      Didn’t U.S pharma companies used to sell drugs overseas that is banned on U.S soil? I don’t know if that is still the case. While collecting data like fingerprints etc is bad, collecting DNA is on whole another level. Imagine using it for immigration purposes for example. Or the govt makes you get a license to have kids (like marriage license today) based on DNA traits. These things might sound comical today, but the social score thing sounded comical too, until it became a reality
- atlasunshrugged 5y ago
  The US isn't actively committing genocide against a specific ethnic group right now... I understand the US has done a ton of awful things, but comparing the actions of a democratic country that promotes rule of law globally (although I am well aware sometimes realpolitik and worse happens) versus a country that has no regard for a rules based order or anything other than increasing their own power seems like a false comparison
  - disgu 5y ago
    > comparing the actions of a democratic country that promotes rule of law globally (although I am well aware sometimes realpolitik and worse happens) versus a country that has no regard for a rules based order or anything other than increasing their own power seems like a false comparison Are you aware that most of the world sees the US not as a country that promotes the rule of law but the one country that's the biggest risk to world peace? It has been like that for many years. The US completely ignores and shits on every single rule it claims to uphold the very moment it becomes inconvenient to keep following it.
    - deviledeggs 5y ago
      China has imprisoned millions of people in one of the biggest ethnic genocides since Nazi gernany. They murder people to sell their organs. The US is a mess but comparing them to a morally bankrupt genocidal China is disingenuous
      - post_below 5y ago
        Your point is valid but it's a question of degree rather than category. The Uyghur camps are about as evil as you can get, no question, but how much cumulative death and suffering has been caused by decades of destabilizing, bombing and invading the middle east? As just one example. From an outside perspective, no one is buying the US propaganda around the oil wars any more than people are buying Chinese propaganda about their camps. China being arguably worse doesn't evict the US from the category of destructive superpowers. I think there's value in being honest about that.
- roenxi 5y ago
  The gene data is the mildest thing the US hoovers up. They've been known to target missiles with phone GPS, and they've gathered big chunks of the world's social graph.
- zthrowaway 5y ago
  US companies have been harvesting DNA data for years without permission? Link? Companies like 23andme have people paying them to research their DNA with permission.
  - mercora 5y ago
    i wonder how much information is gained about me if a close relative decides this is a good idea to do...
    - NeutronStar 5y ago
      My twin did it. So much for privacy.
  - tracedddd 5y ago
    I don’t think most people understand what they are agreeing to with regards to data sharing or mining. Ethically, burying important aspects in a ToS or privacy policy that you know most people will never read seems pretty wrong, while it may be legal.
  - Joool 5y ago
    As others have stated, I do not think that people understand what they sign in the TOS of these companies. In this case the data was actually collected and analyzed with consent (as stated in the article).
  - tzs 5y ago
    I don't know about DNA specifically, but blood that is donated to blood banks that ends up not being needed is sometimes used for research. There's probably something about this somewhere in the fine print on something they signed without reading, but most donors aren't aware of it. There has been some controversy over that because there have been lucrative commercial drugs derived from research using such blood, and some feel that the donors should be given a cut of the profits.
    - kube-system 5y ago
- frogcoder 5y ago
  China does something evil. The U.S. does it too (without giving any evidence). It's OK China doing it now.
  - NeutronStar 5y ago
    > It's OK China doing it now. Or it's bad that both does it...
  - nceqs3 5y ago
    Chinese bots.
  - guilhas 5y ago
    It is just to point the hypocrisies of the discussion tone in HN towards China when USA most times does just the same thing As an example is Uighur camps in China. When USA is the country with most incarcerated in the world in absolute terms, even China with a fraction of the population! And mostly directed at black and poor communities
- nomdep 5y ago
  No, is not. I know that US-based companies do it for greed: they want more money. If China doesn’t do it for the money, then why? Bio weapons maybe, in any case pain, suffering, and death. I prefer the first, thank you.
- LinuxBender 5y ago
  And the U.S. military has been collecting DNA of its enlisted since the 1990's. I stalled them long enough to avoid that, but my FOIA made it all the way to Al Gore and tumbled back down in the form of several boxes of generic vaguely worded reports.
- Pmop 5y ago
  A company based in a democratic country, which gets paid to harvest dna data is a completely different thing from the CCP which holds all the power over all of China and it's entities harvesting dna across the world, with no authorization.
- vixen99 5y ago
  'America's gene giant harvests data from millions of women worldwide' would be an interesting topic for discussion. As it is we know, as the Hong Kong protesters know, that the CCP runs every aspect of China's activities. So nothing of critical significance happens in China without the knowledge and say-so of the CCP. Clearly that's not analogous to the the situation in the US. Why do they want this data? What are they going to do with it? Maybe they just love collecting data. Is this exercise anymore significant than the similar operations carried out by other countries? And why?
chenzhekl 5y ago
China, China, China. How about US-based companies such as 23andme? They have been doing the same thing starting from much much earlier.
- whiddershins 5y ago
  23 and me does this explicitly and with permission. This comment is a rather egregious example of how surreal the false equivalences drawn between these two countries can be.
  - neolog 5y ago
    permisson from whom and for what
  - hjanssen 5y ago
    do most people know about the usage of their DNA data in this form though? My guess would be no
  - jozvolskyef 5y ago
    > The women, who signed consent forms stating that their genetic data would be stored and used for research, said they did not realize their genetic information could end up in China. How do people not see the bias? 23andme doesn't specify which countries can do research on their clients' data, and for one I don't mind whichever country it is since the data can't be linked to people's identities. The only way to link it is to collect the person's DNA, at which point there is no point in using the database.
    - crispyambulance 5y ago
      > ...since the data can't be linked to people's identities. Well, 23andMe does "know" the identity of each individual. They know their name, their relatives, a lot about their genetics, and if given consent, store actual dna (biobanking) so that in the future other tests can be run. That's a lot of sensitive information for one entity to own. Can we assume that 23andMe is at least very competent with security and PII, that they've taken enough safeguards to prevent hackers from stealing the keys to the kingdom? ehh maybe. Can we assume that they won't simply bend over when acquired by another less scrupulous entity? Nope. Can we assume that a future authoritarian government won't simply commandeer data whenever it likes like the CCP already does with Chinese companies? Hell no. More to the point, however, is that folks are limiting the discussion to information about "individuals". Everyone imagines the consequences of individuals being targeted using this data. But really, geopolitical concerns don't care about individuals (modulo a very small number of key people). They care about populations. So even if individual information is kept safe, there's still awful things a bad actor can do with genetic data from everyone even without identifying individuals. That's what the concern is here. 23andMe has the same ultimate risks as BGI. It's just that BGI has skipped a few steps and gone further along in the dystopian nightmare by virtue of the fact that they're a Chinese company and utterly at the service of the CCP.
jozvolskyef 5y ago
> the company is a pivotal player in a genomics race between China and the United States The entire reason for this article. Surely if one were to use a similar US-based service, NSA and US military access to the data couldn't be ruled out.
- kube-system 5y ago
  Health privacy laws in the US do prohibit that except for very specific cases. https://www.hhs.gov/hipaa/for-individuals/court-orders-subpoenas/index.html https://www.hhs.gov/hipaa/for-individuals/court-orders-subpo...
  - La1n 5y ago
    >very specific cases Sadly not true: https://cdt.org/insights/law-enforcement-national-security-access-to-medical-records/ https://cdt.org/insights/law-enforcement-national-security-a... >The HIPAA Privacy Rule provides a broad exception for national security purposes. Under the Rule, a covered entity may disclose any and all protected (identifiable) health information (PHI) for “lawful intelligence, counter-intelligence and national security purposes” (emphasis added). On its face, the Rule does not require a court order or any other enforceable or formal demand; disclosure may be completely voluntary and may be initiated by the covered entity even in the absence of a request from a government official
zerof1l 5y ago
I feel like we are heading towards the world where the USA, EU, and China each form separate, isolated economies. Each economy would try to produce everything by themselves and import as little as possible. The flow of information and research would get limited.
- arodyginc 5y ago
  And Russia. Multipolar views are now becoming mainstream
- loa_in_ 5y ago
  Part of the lore of a series called Ghost in the Shell is that to cross certain region borders around the world you need to swap your cybernetic body, or whatever has been cyberized, to the local variety model, otherwise you don't get access to the local internet (which makes life really hard). How fitting.
ArkanExplorer 5y ago
What's the end-goal of China though? Is it to engineer ethnic bioweapons: https://en.wikipedia.org/wiki/Ethnic_bioweapon https://en.wikipedia.org/wiki/Ethnic_bioweapon Or to figure out the genes for intelligence, health etc. and to modify their population with them?
- chrisco255 5y ago
  Perhaps all of the above?
marderfarker2 5y ago
nobody is going to mention the positive side of this? This is going to contribute to the gene data pool of Asians, which is relatively underrepresented compared to the West (due prevalent of DTC companies), and help a lot in mapping our roots.
- Lio 5y ago
  Isn’t the point of the article that they’re collecting data from women in the West? As such it’s probably less useful for any goal of expanding underrepresented DNA records for Asian women.
- briefcomment 5y ago
  > help a lot in mapping our roots Do people actually care about this?
ngcc_hk 5y ago
China is a totalitarian country and like the current virus it is not subject to anything. Is a at least have a hearing. Hence cf the two is crazy.
rootsudo 5y ago
I'm surprised no one made conversation about the same with covid testing and potential DNA harvesting too.
thowaway959125 5y ago
> The technology could propel China to dominate global pharmaceuticals, and also potentially lead to genetically enhanced soldiers, or engineered pathogens to target the U.S. population or food supply, the advisors said. Or genetically modified viruses that target specific populations. Forget the food supply. Something like a Covid-19 with a bit more specificity and a little more lethality. No wonder the military has their hands in this. And in this context, this is interesting: > and since 2015 it has restricted foreign researchers from accessing gene data on Chinese people And this isn't a "tin foil hat" post or a conspiracy theory. It's food for thought.
- La1n 5y ago
  >And this isn't a "tin foil hat" post or a conspiracy theory. It's food for thought. You can say that too when you bring up some 9/11 truther "questions". Doesn't make it less of a conspiracy theory.
- deleted 5y ago
  [deleted]
shkkmo 5y ago
> Reuters found no evidence BGI violated patient privacy agreements or regulations. However, the privacy policy on the NIFTY test’s website says data collected can be shared when it is “directly relevant to national security or national defense security” in China. > Beijing made clear in a 2019 regulation that genetic data can be a national security matter, and since 2015 it has restricted foreign researchers from accessing gene data on Chinese people. In contrast, the United States and Britain give foreign researchers access to genetic data, as part of open science policies. This not the privacy debacle people are making it out to be, since names are not collected, this is far less of a privacy invasion than 23andMe since that data base can extrapolate and identify you without your consent based on your relatives. This is much more of either (which depends on your perspective): an open science and data access issue or a national security issue
Pmop 5y ago
I'm trying not to be inflammatory. China is a totalitarian regime, they have no check and balances keeping them from using all this power they've been amassing to accomplish any kind of goals they have. It's completely different from the US or any other democracy, which have these mechanisms in place to undermine themselves once they start to do evil stuff with their power, and I'm not saying that it's OK to democracies have this kind of power. There's no stop button for China and I wonder when will we (I'm not American) change our standing against this.
- throwaway21_ 5y ago
  Sure, I clearly remember how Bush Jr. along Cheney, Powel and Rumsfeld went to court and were imprisoned for life for all the misery they inflicted. Oh, wait...
  - adventured 5y ago
    We also didn't put FDR in prison for the misery he caused the Germans or Japanese. I don't recall FDR asking their permission to invade or bomb them. And we didn't put Truman into prison for the misery he caused the Koreans. FDR's actions killed more innocent civilians than the Iraq War did. That's not whataboutism or misdirection, I plainly dislike Bush & Co., they're all monsters. The US should not have invaded Iraq, it wasn't in the US self-interest to do so, it was a wildly irrational choice. And yet the context is a lot more complex than you're suggesting. Saddam is gone. Iraq is a fledgling democracy, which was unthinkable 25 years ago, and their oil output is persistently near record highs. Iraq has a GDP per capita higher than Indonesia, the Philippines, Jordan, Egypt. And not far from South Africa or Paraguay. It's not a total disaster at present, they legitimately have a chance to build something there in the coming decades. These two things are simultaneously true: Iraq's future prospects are better because the US invaded, and the US should not have invaded. The Korean War involved dramatically more misery than Iraq did. Millions of people died in just a few years. Ask the South Koreans if they would prefer that the Kim family were ruling over them while they exist in absolute poverty today. Isn't it just fascinating how today nobody dares to proclaim that the US should have left North Korea to conquer and rule South Korea, that that would have been the obvious better outcome vs the misery they went through for decades after the war. No, people wouldn't dare to say that, but they'll say it about Iraq, because it's a convenient stick to beat the US with. If Iraq's fortunes improve in the coming decades, those same people will go largely silent on the matter and the narrative will be modified (go back and read how the narrative on the Korean War changed across the decades as South Korea's situation radically improved). The people of Iraq have a chance to chart their own course democratically. The US doesn't rule Iraq, we didn't take their oil, we didn't annex their territory. We lost two trillion dollars and thousands of soldiers trying to stop them from killing eachother in a religious war. The situation in Iraq is very far from perfect, so what, the lack of perfection isn't a valid counter argument; the situation in South Korea after the Korean War was very very far from perfect for decades. Even the US was a basketcase for decades after its founding. It was held together by a string, ultimately culminating in a very bloody civil war as well. It took decades for South Korea to build up the structures necessary to sustain itself as a democracy and lift the standard of living of its people. They were still poor as recently as the early 1980s. Why is it that people think Iraq should have been instantly transformed into a mecca? That's a level of expectation nobody would dare apply to any other similar context. As though the end of Saddam's rule was somehow going to be soft and fluffy, rather than involving misery. There was no other scenario than to go through misery given the sectarian split in Iraq and the way Iraq was being ruled, it was always going to prompt a civil war. The issue is that the US was involved. It's an easy point that can be used to hit the US with. How can I be sure of that? Well, simple, consider the alternative. The opposite position is: condemn the people of Iraq to living under Saddam and his sadistic family (or the equivalent). I'll note that was a minority political group oppressing and torturing a far larger majority group through a brutal totalitarian system with zero human rights. Condemn the Iraqi people to go back to that? I'd challenge someone to dare to say that right now and then back it up as the better alternative to the present (that's not what would happen of course; a person will instead proclaim a fantasy scenario of fluffy bunnies and utopia where glorious happiness and peace would shine from the sky magically and all the conflicting groups in Iraq would hold a love-in and Saddam would have just willingly retired as dictator-for-life and then there would have been no civil war in the aftermath and instead it would have been an organic gentle process). I'd like to see someone stand up and proclaim it would have been better if the US hadn't rescued South Korea from being enslaved by North Korea's Kim Dynasty. Because that's exactly what people so often openly proclaim about the Iraq situation, including its majority Shia and minority Kurds who were brutalized by Saddam. The US shouldn't have gotten involved in Iraq, it should have never invaded Iraq. However the prospects for the people of Iraq are not worse today than they were under Saddam's reign of terror. And it's entirely an intellectual con that Iraq was supposedly stable under Saddam (one of the few arguments frequently thrown out in support of the Saddam scenario). Iraq was extraordinarily unstable under Saddam, which is why he had to constantly murder and purge people. When you have actual stability you don't have to slaughter and torture people; Saddam had to do that constantly to prevent his system from collapsing due to its inherent instability.
deleted 5y ago
[deleted]
Dulaja999 5y ago
The Last Sword Maker by Brian Nelson https://www.goodreads.com/book/show/38642886-the-last-sword-maker https://www.goodreads.com/book/show/38642886-the-last-sword-...

207 points by emptybits 5y ago

I see kind of a silver lining here, in that it has the potential to get US-based lawmakers to care about mass data-harvesting enough to make some laws about it. I imagine that privacy laws are easier to get through congress if the perceived threat is a foreign government rather than a home-grown tech giant

FpUser 5y ago
They'll just slap sanctions on that company / government to prevent gathering of the info from the US population. Also if such data offers verified massive advantage as they say the US might be more inclined to instead repeal / weaken privacy laws to keep up with China.

bobsoap 5y ago

> BGI said in a statement it “has never been asked to provide – nor provided – data from its NIFTY tests to Chinese authorities for national security or national defense security purposes.” ...as if those two very specific use cases are the only possible "reasons" authorities can ever come up with when they want the data.

ivanhoe 5y ago

Yeah, this is exactly how the rest of the world feels about US-based companies harvesting dna data for years...

dragonelite 5y ago
Find and replace China with US and reality still makes sense. Then the US expects the rest of the world to follow their rule based order, where no one knows what the freaking rules are except rules for thee but for me(US).
- eru 5y ago
  Most American rules don't apply overseas. Eg they can spy on foreigners all they like.
  - lucian1900 5y ago
    And they have a special rule that they’ll invade The Hague if US war criminals are ever tried there. All those presidents and generals and spooks are safe from justice.
    - Vinnl 5y ago
      You're talking about the The Hague Invasion Act: https://en.wikipedia.org/wiki/The_Hague_Invasion_Act https://en.wikipedia.org/wiki/The_Hague_Invasion_Act Just a note, the US doesn't need permission from the Netherlands to invade them, of course. However, as I understand it, usually the US president needs permission from Congress before deciding to invade another country. In this case, Congress has given permission in advance to invade the Netherlands if the ICC tries a US citizen.
      - eru 5y ago
        > However, as I understand it, usually the US president needs permission from Congress before deciding to invade another country. Only for declaration of war. The US hasn't declared war on anyone in since WWII. See https://en.wikipedia.org/wiki/Declaration_of_war_by_the_United_States https://en.wikipedia.org/wiki/Declaration_of_war_by_the_Unit...
  - akudha 5y ago
    Didn’t U.S pharma companies used to sell drugs overseas that is banned on U.S soil? I don’t know if that is still the case. While collecting data like fingerprints etc is bad, collecting DNA is on whole another level. Imagine using it for immigration purposes for example. Or the govt makes you get a license to have kids (like marriage license today) based on DNA traits. These things might sound comical today, but the social score thing sounded comical too, until it became a reality
atlasunshrugged 5y ago
The US isn't actively committing genocide against a specific ethnic group right now... I understand the US has done a ton of awful things, but comparing the actions of a democratic country that promotes rule of law globally (although I am well aware sometimes realpolitik and worse happens) versus a country that has no regard for a rules based order or anything other than increasing their own power seems like a false comparison
- disgu 5y ago
  > comparing the actions of a democratic country that promotes rule of law globally (although I am well aware sometimes realpolitik and worse happens) versus a country that has no regard for a rules based order or anything other than increasing their own power seems like a false comparison Are you aware that most of the world sees the US not as a country that promotes the rule of law but the one country that's the biggest risk to world peace? It has been like that for many years. The US completely ignores and shits on every single rule it claims to uphold the very moment it becomes inconvenient to keep following it.
  - deviledeggs 5y ago
    China has imprisoned millions of people in one of the biggest ethnic genocides since Nazi gernany. They murder people to sell their organs. The US is a mess but comparing them to a morally bankrupt genocidal China is disingenuous
    - post_below 5y ago
      Your point is valid but it's a question of degree rather than category. The Uyghur camps are about as evil as you can get, no question, but how much cumulative death and suffering has been caused by decades of destabilizing, bombing and invading the middle east? As just one example. From an outside perspective, no one is buying the US propaganda around the oil wars any more than people are buying Chinese propaganda about their camps. China being arguably worse doesn't evict the US from the category of destructive superpowers. I think there's value in being honest about that.
roenxi 5y ago
The gene data is the mildest thing the US hoovers up. They've been known to target missiles with phone GPS, and they've gathered big chunks of the world's social graph.
zthrowaway 5y ago
US companies have been harvesting DNA data for years without permission? Link? Companies like 23andme have people paying them to research their DNA with permission.
- mercora 5y ago
  i wonder how much information is gained about me if a close relative decides this is a good idea to do...
  - NeutronStar 5y ago
    My twin did it. So much for privacy.
- tracedddd 5y ago
  I don’t think most people understand what they are agreeing to with regards to data sharing or mining. Ethically, burying important aspects in a ToS or privacy policy that you know most people will never read seems pretty wrong, while it may be legal.
- Joool 5y ago
  As others have stated, I do not think that people understand what they sign in the TOS of these companies. In this case the data was actually collected and analyzed with consent (as stated in the article).
- tzs 5y ago
  I don't know about DNA specifically, but blood that is donated to blood banks that ends up not being needed is sometimes used for research. There's probably something about this somewhere in the fine print on something they signed without reading, but most donors aren't aware of it. There has been some controversy over that because there have been lucrative commercial drugs derived from research using such blood, and some feel that the donors should be given a cut of the profits.
  - kube-system 5y ago
frogcoder 5y ago
China does something evil. The U.S. does it too (without giving any evidence). It's OK China doing it now.
- NeutronStar 5y ago
  > It's OK China doing it now. Or it's bad that both does it...
- nceqs3 5y ago
  Chinese bots.
- guilhas 5y ago
  It is just to point the hypocrisies of the discussion tone in HN towards China when USA most times does just the same thing As an example is Uighur camps in China. When USA is the country with most incarcerated in the world in absolute terms, even China with a fraction of the population! And mostly directed at black and poor communities
nomdep 5y ago
No, is not. I know that US-based companies do it for greed: they want more money. If China doesn’t do it for the money, then why? Bio weapons maybe, in any case pain, suffering, and death. I prefer the first, thank you.
LinuxBender 5y ago
And the U.S. military has been collecting DNA of its enlisted since the 1990's. I stalled them long enough to avoid that, but my FOIA made it all the way to Al Gore and tumbled back down in the form of several boxes of generic vaguely worded reports.
Pmop 5y ago
A company based in a democratic country, which gets paid to harvest dna data is a completely different thing from the CCP which holds all the power over all of China and it's entities harvesting dna across the world, with no authorization.
vixen99 5y ago
'America's gene giant harvests data from millions of women worldwide' would be an interesting topic for discussion. As it is we know, as the Hong Kong protesters know, that the CCP runs every aspect of China's activities. So nothing of critical significance happens in China without the knowledge and say-so of the CCP. Clearly that's not analogous to the the situation in the US. Why do they want this data? What are they going to do with it? Maybe they just love collecting data. Is this exercise anymore significant than the similar operations carried out by other countries? And why?

chenzhekl 5y ago

China, China, China. How about US-based companies such as 23andme? They have been doing the same thing starting from much much earlier.

whiddershins 5y ago
23 and me does this explicitly and with permission. This comment is a rather egregious example of how surreal the false equivalences drawn between these two countries can be.
- neolog 5y ago
  permisson from whom and for what
- hjanssen 5y ago
  do most people know about the usage of their DNA data in this form though? My guess would be no
- jozvolskyef 5y ago
  > The women, who signed consent forms stating that their genetic data would be stored and used for research, said they did not realize their genetic information could end up in China. How do people not see the bias? 23andme doesn't specify which countries can do research on their clients' data, and for one I don't mind whichever country it is since the data can't be linked to people's identities. The only way to link it is to collect the person's DNA, at which point there is no point in using the database.
  - crispyambulance 5y ago
    > ...since the data can't be linked to people's identities. Well, 23andMe does "know" the identity of each individual. They know their name, their relatives, a lot about their genetics, and if given consent, store actual dna (biobanking) so that in the future other tests can be run. That's a lot of sensitive information for one entity to own. Can we assume that 23andMe is at least very competent with security and PII, that they've taken enough safeguards to prevent hackers from stealing the keys to the kingdom? ehh maybe. Can we assume that they won't simply bend over when acquired by another less scrupulous entity? Nope. Can we assume that a future authoritarian government won't simply commandeer data whenever it likes like the CCP already does with Chinese companies? Hell no. More to the point, however, is that folks are limiting the discussion to information about "individuals". Everyone imagines the consequences of individuals being targeted using this data. But really, geopolitical concerns don't care about individuals (modulo a very small number of key people). They care about populations. So even if individual information is kept safe, there's still awful things a bad actor can do with genetic data from everyone even without identifying individuals. That's what the concern is here. 23andMe has the same ultimate risks as BGI. It's just that BGI has skipped a few steps and gone further along in the dystopian nightmare by virtue of the fact that they're a Chinese company and utterly at the service of the CCP.

jozvolskyef 5y ago

> the company is a pivotal player in a genomics race between China and the United States The entire reason for this article. Surely if one were to use a similar US-based service, NSA and US military access to the data couldn't be ruled out.

kube-system 5y ago
Health privacy laws in the US do prohibit that except for very specific cases. https://www.hhs.gov/hipaa/for-individuals/court-orders-subpoenas/index.html https://www.hhs.gov/hipaa/for-individuals/court-orders-subpo...
- La1n 5y ago
  >very specific cases Sadly not true: https://cdt.org/insights/law-enforcement-national-security-access-to-medical-records/ https://cdt.org/insights/law-enforcement-national-security-a... >The HIPAA Privacy Rule provides a broad exception for national security purposes. Under the Rule, a covered entity may disclose any and all protected (identifiable) health information (PHI) for “lawful intelligence, counter-intelligence and national security purposes” (emphasis added). On its face, the Rule does not require a court order or any other enforceable or formal demand; disclosure may be completely voluntary and may be initiated by the covered entity even in the absence of a request from a government official

zerof1l 5y ago

I feel like we are heading towards the world where the USA, EU, and China each form separate, isolated economies. Each economy would try to produce everything by themselves and import as little as possible. The flow of information and research would get limited.

arodyginc 5y ago
And Russia. Multipolar views are now becoming mainstream
loa_in_ 5y ago
Part of the lore of a series called Ghost in the Shell is that to cross certain region borders around the world you need to swap your cybernetic body, or whatever has been cyberized, to the local variety model, otherwise you don't get access to the local internet (which makes life really hard). How fitting.

ArkanExplorer 5y ago

What's the end-goal of China though? Is it to engineer ethnic bioweapons: https://en.wikipedia.org/wiki/Ethnic_bioweapon https://en.wikipedia.org/wiki/Ethnic_bioweapon Or to figure out the genes for intelligence, health etc. and to modify their population with them?

chrisco255 5y ago
Perhaps all of the above?

marderfarker2 5y ago

nobody is going to mention the positive side of this? This is going to contribute to the gene data pool of Asians, which is relatively underrepresented compared to the West (due prevalent of DTC companies), and help a lot in mapping our roots.

Lio 5y ago
Isn’t the point of the article that they’re collecting data from women in the West? As such it’s probably less useful for any goal of expanding underrepresented DNA records for Asian women.
briefcomment 5y ago
> help a lot in mapping our roots Do people actually care about this?

ngcc_hk 5y ago

China is a totalitarian country and like the current virus it is not subject to anything. Is a at least have a hearing. Hence cf the two is crazy.

rootsudo 5y ago

I'm surprised no one made conversation about the same with covid testing and potential DNA harvesting too.

thowaway959125 5y ago

> The technology could propel China to dominate global pharmaceuticals, and also potentially lead to genetically enhanced soldiers, or engineered pathogens to target the U.S. population or food supply, the advisors said. Or genetically modified viruses that target specific populations. Forget the food supply. Something like a Covid-19 with a bit more specificity and a little more lethality. No wonder the military has their hands in this. And in this context, this is interesting: > and since 2015 it has restricted foreign researchers from accessing gene data on Chinese people And this isn't a "tin foil hat" post or a conspiracy theory. It's food for thought.

La1n 5y ago
>And this isn't a "tin foil hat" post or a conspiracy theory. It's food for thought. You can say that too when you bring up some 9/11 truther "questions". Doesn't make it less of a conspiracy theory.
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shkkmo 5y ago

> Reuters found no evidence BGI violated patient privacy agreements or regulations. However, the privacy policy on the NIFTY test’s website says data collected can be shared when it is “directly relevant to national security or national defense security” in China. > Beijing made clear in a 2019 regulation that genetic data can be a national security matter, and since 2015 it has restricted foreign researchers from accessing gene data on Chinese people. In contrast, the United States and Britain give foreign researchers access to genetic data, as part of open science policies. This not the privacy debacle people are making it out to be, since names are not collected, this is far less of a privacy invasion than 23andMe since that data base can extrapolate and identify you without your consent based on your relatives. This is much more of either (which depends on your perspective): an open science and data access issue or a national security issue

Pmop 5y ago

I'm trying not to be inflammatory. China is a totalitarian regime, they have no check and balances keeping them from using all this power they've been amassing to accomplish any kind of goals they have. It's completely different from the US or any other democracy, which have these mechanisms in place to undermine themselves once they start to do evil stuff with their power, and I'm not saying that it's OK to democracies have this kind of power. There's no stop button for China and I wonder when will we (I'm not American) change our standing against this.

throwaway21_ 5y ago
Sure, I clearly remember how Bush Jr. along Cheney, Powel and Rumsfeld went to court and were imprisoned for life for all the misery they inflicted. Oh, wait...
- adventured 5y ago
  We also didn't put FDR in prison for the misery he caused the Germans or Japanese. I don't recall FDR asking their permission to invade or bomb them. And we didn't put Truman into prison for the misery he caused the Koreans. FDR's actions killed more innocent civilians than the Iraq War did. That's not whataboutism or misdirection, I plainly dislike Bush & Co., they're all monsters. The US should not have invaded Iraq, it wasn't in the US self-interest to do so, it was a wildly irrational choice. And yet the context is a lot more complex than you're suggesting. Saddam is gone. Iraq is a fledgling democracy, which was unthinkable 25 years ago, and their oil output is persistently near record highs. Iraq has a GDP per capita higher than Indonesia, the Philippines, Jordan, Egypt. And not far from South Africa or Paraguay. It's not a total disaster at present, they legitimately have a chance to build something there in the coming decades. These two things are simultaneously true: Iraq's future prospects are better because the US invaded, and the US should not have invaded. The Korean War involved dramatically more misery than Iraq did. Millions of people died in just a few years. Ask the South Koreans if they would prefer that the Kim family were ruling over them while they exist in absolute poverty today. Isn't it just fascinating how today nobody dares to proclaim that the US should have left North Korea to conquer and rule South Korea, that that would have been the obvious better outcome vs the misery they went through for decades after the war. No, people wouldn't dare to say that, but they'll say it about Iraq, because it's a convenient stick to beat the US with. If Iraq's fortunes improve in the coming decades, those same people will go largely silent on the matter and the narrative will be modified (go back and read how the narrative on the Korean War changed across the decades as South Korea's situation radically improved). The people of Iraq have a chance to chart their own course democratically. The US doesn't rule Iraq, we didn't take their oil, we didn't annex their territory. We lost two trillion dollars and thousands of soldiers trying to stop them from killing eachother in a religious war. The situation in Iraq is very far from perfect, so what, the lack of perfection isn't a valid counter argument; the situation in South Korea after the Korean War was very very far from perfect for decades. Even the US was a basketcase for decades after its founding. It was held together by a string, ultimately culminating in a very bloody civil war as well. It took decades for South Korea to build up the structures necessary to sustain itself as a democracy and lift the standard of living of its people. They were still poor as recently as the early 1980s. Why is it that people think Iraq should have been instantly transformed into a mecca? That's a level of expectation nobody would dare apply to any other similar context. As though the end of Saddam's rule was somehow going to be soft and fluffy, rather than involving misery. There was no other scenario than to go through misery given the sectarian split in Iraq and the way Iraq was being ruled, it was always going to prompt a civil war. The issue is that the US was involved. It's an easy point that can be used to hit the US with. How can I be sure of that? Well, simple, consider the alternative. The opposite position is: condemn the people of Iraq to living under Saddam and his sadistic family (or the equivalent). I'll note that was a minority political group oppressing and torturing a far larger majority group through a brutal totalitarian system with zero human rights. Condemn the Iraqi people to go back to that? I'd challenge someone to dare to say that right now and then back it up as the better alternative to the present (that's not what would happen of course; a person will instead proclaim a fantasy scenario of fluffy bunnies and utopia where glorious happiness and peace would shine from the sky magically and all the conflicting groups in Iraq would hold a love-in and Saddam would have just willingly retired as dictator-for-life and then there would have been no civil war in the aftermath and instead it would have been an organic gentle process). I'd like to see someone stand up and proclaim it would have been better if the US hadn't rescued South Korea from being enslaved by North Korea's Kim Dynasty. Because that's exactly what people so often openly proclaim about the Iraq situation, including its majority Shia and minority Kurds who were brutalized by Saddam. The US shouldn't have gotten involved in Iraq, it should have never invaded Iraq. However the prospects for the people of Iraq are not worse today than they were under Saddam's reign of terror. And it's entirely an intellectual con that Iraq was supposedly stable under Saddam (one of the few arguments frequently thrown out in support of the Saddam scenario). Iraq was extraordinarily unstable under Saddam, which is why he had to constantly murder and purge people. When you have actual stability you don't have to slaughter and torture people; Saddam had to do that constantly to prevent his system from collapsing due to its inherent instability.

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Dulaja999 5y ago

The Last Sword Maker by Brian Nelson https://www.goodreads.com/book/show/38642886-the-last-sword-maker https://www.goodreads.com/book/show/38642886-the-last-sword-...