8 ms·

A new era of personalised medicine: or how I got myself sequenced for free

90 points by souradip 5y ago

notahacker 5y ago
I'm all in favour of signing up as a marrow donor (I'm registered with DKNS myself) but burdening charities with administrative tasks to save yourself money feels a bit... cheap, and you get a lot more for paying for a full genome sequencing or even a 23andme report.
- hellbannedguy 5y ago
  I don't know anything about those two charities. In the USA, 501c3's are in many cases just businesses. Meaning--they aren't sacred benevolent entities. Waystar used to off a free look at a nonprofits 1040's. I believe their are other that offer a free look at this public information. So many nonprofits are ridiculously overfunded. So many only pay a livable salary to the key founders, usually an husband and wife team. One day, I want to put together a list of good nonprofits. I once heard St. Jude Children's hospital has enough funding to last for 20 years, including costs of new technology; if donations were cut off today. My point is be savvy with donations. There are very good charities out there. (True story. National parks have one spot in the park available for first admendment speech. In Muir Woods National Monument it was a couple of parking spots. For years this guy used to hand out flyers to tourists who just got off buses. He had some nonprofit that proposed to save Redwood trees. I looked up the nonprofit, and couldn't find it. Every night he would show up to the local watering hole with a 3" stack of money he woukd count out. I imagine he was making 2-3k a day. Why am I enclosing this? Because I'm tired of charities taking advantage of certain people.)
  - nefitty 5y ago
    GiveWell and Charity Navigator are well-known and trusted organizations that provide this service. https://www.givewell.org/ https://www.givewell.org/ https://www.charitynavigator.org/ https://www.charitynavigator.org/
- souradip 5y ago
  I should probably say that my primary reason for signing up to a stem cell donor registry is to actually be a donor! This data is generated as a byproduct of signing up and is also quite interesting on a personal level. I was thinking that framing it in a way to also find out interesting things about yourself might be a good way to encourage people who might not have thought about it to sign up for the first time, and this would be far more cost-effective than a traditional in-person donor recruitment drive, but let me know what you think!
deleted 5y ago
[deleted]
_Microft 5y ago
Let me be blunt, costing charities time and money that they could use for their actual mission of helping people to find a life-saving match with a donor is a real shitty move. This is freeloading at its finest.
- blacksmith_tb 5y ago
  I wonder if charities couldn't offer it as an incentive to attract more potential donors? Agree to participate, and we'll give you your sequence upfront, no data-release-requests needed? Obviously some people are trying hard not to be sequenced for any reason (because of privacy concerns apparently) but plenty of other people are interested in heredity, or health implications.
  - ineedasername 5y ago
    I'm assuming the charities get a better rate, but typical home kits cost about $200... Not cheap to give out for free even if they get a 75% bulk discount. They're also not likely to get money from people like this who were deliberately working the system to avoid paying. Not only that, but insurance will often cover services like GeneSight that do this specifically as a health service.
    - blacksmith_tb 5y ago
      Sure, though here in the US I would bet most insurers would require a physician to order the test for it to be covered? Which presumably would happen only if they thought it'd be useful for diagnosing something, rather than that you were curious (esp. if your curiosity was about your heritage and not something clearly medical).
      - deleted 5y ago
        [deleted]
      - ineedasername 5y ago
        Yep, a physician has to order the test, but considering they are extremely useful in preventative medicine most people I know that have had it done didn't have any issue getting a doctor to order one.
amluto 5y ago
I feel like GDPR-ing a bone marrow registry to obtain one's data is rude. I got my HLA data from the registry by asking politely.
- renewiltord 5y ago
  GDPR SARs are just a standardized form for a data subject to have access to data on herself. It is, in my opinion, far politer to use a form letter Subject Access Request that can be dealt with using a standard process rather than a custom interaction. I see it as just picking things off a menu. Far less trouble than describing to your waitress that you’re looking for a ground beef patty, grilled with cheese, with onions, tomatoes, and lettuce added and placed between two buns. Just say cheeseburger. You know cheeseburger. They know cheeseburger. Everyone is better off.
iandanforth 5y ago
"You may be aware of bone marrow, or stem cell transplants. These are life-saving for the people who need them, especially after a blood cancer. You can sign up for free at charities such as Anthony Nolan or DKMS in the UK." "And it was a win-win scenario - they get to call upon me if someone needs my stem cells (a painless procedure that's no more complicated than donating blood)!" Maybe I'm confused but this person doesn't seem to know what is involved with donating bone marrow. It is a serious surgical procedure done under anesthesia. https://bethematch.org/support-the-cause/donate-bone-marrow/donation-faqs/ https://bethematch.org/support-the-cause/donate-bone-marrow/...
- shkkmo 5y ago
  The there are two procedures, the stem cell procedure is acurately described according to the link you posted. > How are bone marrow and peripheral blood stem cell (PBSC) donation different? > Donating bone marrow is a surgical procedure done under general or regional anesthesia in a hospital. While a donor receives anesthesia, doctors use needles to withdraw liquid marrow from the back of the pelvic bone. > PBSC donation is a non-surgical procedure done in an outpatient clinic. PBSC donors receive daily injections of a drug called filgrastim for five days, to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor's blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.
  - iandanforth 5y ago
    Ahh that's what's going on, the first sentence conflates the two and the second sentence doesn't specify PBSC.
    - deleted 5y ago
      [deleted]
  - lethoso 5y ago
    As someone who's donated via PBSC it's a whole lot more than a regular blood donation. Two batteries of tests, the drugs are no joke, and the donation session is more or less a whole day affair - or two days if you're unlucky and they don't harvest enough cells the first day (I was unlucky). I don't have any regrets doing it - the impost on me was fairly trivial compared to the difference it can make for the recipient, but it's not a thing to be taken lightly.
kharak 5y ago
I personally feel that this embodies the hacker spirit perfectly. Has this service been intended to allow the donor access to his sequencing data? No. Can someone use the systems in place to get this info anyway? Yes, as it shows. The other comments mind the burden to the charities. I personally cannot agree here. After all, this is the donors data. One might even think, that proactively sharing data could increase the number of donors.
- souradip 5y ago
  Much appreciated, I'm glad you agree! :)
- esyir 5y ago
  Sure it does, in exactly the same way running crypto on Ci does too.
ineedasername 5y ago
An importing distinction: The author did not get himself sequenced. He had genotyping. Genotyping basically picks out a few specific data points. Sequencing reads an entire piece or entire genome completely. From a health perspective, genotyping pulls data points that we already know can be markers for something significant. Sequencing gets a lot more data, and would sort of be "future proof" against the need to do further testing if new markers were identified you can just look at the data already gathered. Otherwise you'd need to get Genotyping done again.
- souradip 5y ago
  This is very true, and genotyping just the HLA/KIR loci won't tell you much about all the other genes that are important for health. However, the HLA typing is at least a start (and a free byproduct of signing up to donate stem cells) to introduce you to the rabbit hole of personal genomics! :) This is also slightly different to the (linkage-disequilibrium-based) SNP arraying done by other genotyping places, since the HLA locus is fairly widely researched in its associations with infection and (auto)immunity!
  - ineedasername 5y ago
    Oh absolutely... It's a lot more expensive for sequencing, so there's no reason not to take a cheap option that at least gets you checked against known issues.
cblconfederate 5y ago
dont do this. you can sequence yourself from Dante labs (an italian company IIRC) which will give you all the data of 30x sequencing including the raw reads for like $200. The problem is -- i don't know what to do with the data as i havent had the time to do anything.
- souradip 5y ago
  You can sequence yourself properly (and it's more information that way), but this way you can get called upon to donate if you're a match for someone somewhere in the world!
  - cblconfederate 5y ago
    shouldn't you be able to match yourself (at least partially) by uploading your data somewhere?
    - toomuchtodo 5y ago
      Ideally, non profit organizations around tissue sourcing provide a mechanism to ingest raw genotyping data [1] from providers through an auth flow for those who have previously been sequenced or don’t want to burden the charity (if a donor can afford it) with the sequencing cost. If one could “one click” share their genotyping from from a sequencing provider, I imagine you’d see an uptick in coverage for donor sourcing across the populace. The data is already out there. [1] https://customercare.23andme.com/hc/en-us/articles/212196868-Accessing-Your-Raw-Genetic-Data https://customercare.23andme.com/hc/en-us/articles/212196868...
  - redis_mlc 5y ago
    > you can get called upon to donate Dude, calm down. Donating bone marrow is probably ok, but note that before donating a kidney, understand that can affect your health and life expectancy. That was not told to past donors, but it's a thing. (As you get older, your organ function decreases from 100% (or 200%) to less than 100%, so losing a kidney affects older people. In China, people in banned religions are "volunteered" for double-lung and heart transplants, so it also matters what country you're in. Their transplant science is based on 28 year-olds, so if you're several years younger or older, you should be good unless you have a rare typing.
Zababa 5y ago
Fun fact: getting a DNA sequencing is illegal in France and is punishable by a 3750€ fine. I find this frustrating that I can't legally access my own DNA.
- smegger001 5y ago
  Why would they make that a law? Please say there are medical/research exemptions at least?
  - cblconfederate 5y ago
    afaik it was to prevent paternity tests
    - smegger001 5y ago
      What???? Why would France not want paternity tests? Did they just watch 'Maury' to much and descide to nope out on this or something? Because it, naively perhaps, seems to me like paternity test are a good thing on a societal level. Makes it easy to hold deadbeat fathers accountable. Proof of paternity can be used to for single mothers to demand child support. and in cases divorce due to infidelity can be prevent men from having to pay for other mens children.
      - skocznymroczny 5y ago
        I think it's a backwards logic of how paternity tests mean you "don't believe women" and thus are oppressing them. Completely ignoring the plight of men paying for children which aren't even their own.
  - user982 5y ago
    The ban is apparently to prevent access to paternity testing. Medical/scientific/judicial purposes are exempted.
- dekhn 5y ago
  You mean DTC DNA tests are illegal. DNA sequencing of humans is not. https://www.fiercebiotech.com/it/france-plans-745m-investment-to-build-235-000-genome-a-year-sequencing-operation https://www.fiercebiotech.com/it/france-plans-745m-investmen... and I didn't have to look hard to find papers published by French authors in French journals that show they are sequencing humans in France.
aj7 5y ago
I wouldn’t get sequenced in America with the fascists so close to control.
- renewiltord 5y ago
  I actually regretted donating because of this very reason. If I’d thought about it I wouldn’t have. But the bethematch.org marketing material really tugged at the heartstrings. Never again, though.
  - Ruthalas 5y ago
    Out of curiosity, why 'never again'? If your concern is that your genetic information is no longer entirely private, wouldn't continuing to act as a donor cause no /further/ harm? (They aren't getting anything they don't already have I guess.)
    - renewiltord 5y ago
      Ah, for a couple of reasons: * They need perfect information retention for refreshing to be useless. I don't think they have that. * I didn't intend to refer only to them. Not going to donate ever again. That's just an information proliferation thing. It's sort of like how I know that my SSN is out there because of Equifax, but I still don't post it on gas station bathrooms with other info.
- dekhn 5y ago
  I had my genome sequenced and it's uploaded to the web with my name attached. Can you articulate a specific concern?
  - aj7 5y ago
    That’s easy. A government decides to collude with healthcare-for-profit. So they allow any provider to demand your genetic sequence. As things are discovered, they price your healthcare accordingly, economically disadvantaging you based on your genes.
cblconfederate 5y ago
There's no reason why we don't have sequencing for everyone at this point. Just imagining the opportunities we are missing here because of a) the US inane insurance system and b) the irrational technophobia of EU. It's 2021 and we 're not allowed to use our SNPs to prevent illness
- hentrep 5y ago
  Is data privacy not a valid reason?
  - whatshisface 5y ago
    A lot of people would be willing for sequences to exist if they were treated like the medical records they are, and not as a startup's fungible data asset.
  - cblconfederate 5y ago
    Are people's medical records private?
    - croes 5y ago
      Yes
      - cblconfederate 5y ago
        Then DNA can be private too (To be clear here in europe medical records are held by healthcare services, but they are protected. They are not private property tho)
- croes 5y ago
  Once a genetic condition is found, your insurance company will exclude certain treatments or skyrocket your premiums.
  - cblconfederate 5y ago
tryonenow 5y ago
It's hard for me to believe that there is still no way to get your genes sequenced anonymously. There has to be a big enough market for a startup to do so without storing and selling "anonymised" data, right? Is it really that expensive with modern tech to sequence a person's genes and compare against an existing database? I'd pay a good deal extra to 23&me if they'd be willing to take my sample without identifying information and return my results via an [throwaway] email address.
- ImPostingOnHN 5y ago
  You can provide fake info to 23andme.
danellis 5y ago
> NB: Some journal websites find it difficult to display the asterisk and so they replace it with a w - so HLA-Cw04 and HLA-C*04 both mean the same thing. Ironically, this comes right after the line where his own website rendered the text between the asterisks as italic.

90 points by souradip 5y ago

I'm all in favour of signing up as a marrow donor (I'm registered with DKNS myself) but burdening charities with administrative tasks to save yourself money feels a bit... cheap, and you get a lot more for paying for a full genome sequencing or even a 23andme report.

hellbannedguy 5y ago
I don't know anything about those two charities. In the USA, 501c3's are in many cases just businesses. Meaning--they aren't sacred benevolent entities. Waystar used to off a free look at a nonprofits 1040's. I believe their are other that offer a free look at this public information. So many nonprofits are ridiculously overfunded. So many only pay a livable salary to the key founders, usually an husband and wife team. One day, I want to put together a list of good nonprofits. I once heard St. Jude Children's hospital has enough funding to last for 20 years, including costs of new technology; if donations were cut off today. My point is be savvy with donations. There are very good charities out there. (True story. National parks have one spot in the park available for first admendment speech. In Muir Woods National Monument it was a couple of parking spots. For years this guy used to hand out flyers to tourists who just got off buses. He had some nonprofit that proposed to save Redwood trees. I looked up the nonprofit, and couldn't find it. Every night he would show up to the local watering hole with a 3" stack of money he woukd count out. I imagine he was making 2-3k a day. Why am I enclosing this? Because I'm tired of charities taking advantage of certain people.)
- nefitty 5y ago
  GiveWell and Charity Navigator are well-known and trusted organizations that provide this service. https://www.givewell.org/ https://www.givewell.org/ https://www.charitynavigator.org/ https://www.charitynavigator.org/
souradip 5y ago
I should probably say that my primary reason for signing up to a stem cell donor registry is to actually be a donor! This data is generated as a byproduct of signing up and is also quite interesting on a personal level. I was thinking that framing it in a way to also find out interesting things about yourself might be a good way to encourage people who might not have thought about it to sign up for the first time, and this would be far more cost-effective than a traditional in-person donor recruitment drive, but let me know what you think!

deleted 5y ago

[deleted]

_Microft 5y ago

Let me be blunt, costing charities time and money that they could use for their actual mission of helping people to find a life-saving match with a donor is a real shitty move. This is freeloading at its finest.

blacksmith_tb 5y ago
I wonder if charities couldn't offer it as an incentive to attract more potential donors? Agree to participate, and we'll give you your sequence upfront, no data-release-requests needed? Obviously some people are trying hard not to be sequenced for any reason (because of privacy concerns apparently) but plenty of other people are interested in heredity, or health implications.
- ineedasername 5y ago
  I'm assuming the charities get a better rate, but typical home kits cost about $200... Not cheap to give out for free even if they get a 75% bulk discount. They're also not likely to get money from people like this who were deliberately working the system to avoid paying. Not only that, but insurance will often cover services like GeneSight that do this specifically as a health service.
  - blacksmith_tb 5y ago
    Sure, though here in the US I would bet most insurers would require a physician to order the test for it to be covered? Which presumably would happen only if they thought it'd be useful for diagnosing something, rather than that you were curious (esp. if your curiosity was about your heritage and not something clearly medical).
    - deleted 5y ago
      [deleted]
    - ineedasername 5y ago
      Yep, a physician has to order the test, but considering they are extremely useful in preventative medicine most people I know that have had it done didn't have any issue getting a doctor to order one.

amluto 5y ago

I feel like GDPR-ing a bone marrow registry to obtain one's data is rude. I got my HLA data from the registry by asking politely.

renewiltord 5y ago
GDPR SARs are just a standardized form for a data subject to have access to data on herself. It is, in my opinion, far politer to use a form letter Subject Access Request that can be dealt with using a standard process rather than a custom interaction. I see it as just picking things off a menu. Far less trouble than describing to your waitress that you’re looking for a ground beef patty, grilled with cheese, with onions, tomatoes, and lettuce added and placed between two buns. Just say cheeseburger. You know cheeseburger. They know cheeseburger. Everyone is better off.

iandanforth 5y ago

"You may be aware of bone marrow, or stem cell transplants. These are life-saving for the people who need them, especially after a blood cancer. You can sign up for free at charities such as Anthony Nolan or DKMS in the UK." "And it was a win-win scenario - they get to call upon me if someone needs my stem cells (a painless procedure that's no more complicated than donating blood)!" Maybe I'm confused but this person doesn't seem to know what is involved with donating bone marrow. It is a serious surgical procedure done under anesthesia. https://bethematch.org/support-the-cause/donate-bone-marrow/donation-faqs/ https://bethematch.org/support-the-cause/donate-bone-marrow/...

shkkmo 5y ago
The there are two procedures, the stem cell procedure is acurately described according to the link you posted. > How are bone marrow and peripheral blood stem cell (PBSC) donation different? > Donating bone marrow is a surgical procedure done under general or regional anesthesia in a hospital. While a donor receives anesthesia, doctors use needles to withdraw liquid marrow from the back of the pelvic bone. > PBSC donation is a non-surgical procedure done in an outpatient clinic. PBSC donors receive daily injections of a drug called filgrastim for five days, to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor's blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.
- iandanforth 5y ago
  Ahh that's what's going on, the first sentence conflates the two and the second sentence doesn't specify PBSC.
  - deleted 5y ago
    [deleted]
- lethoso 5y ago
  As someone who's donated via PBSC it's a whole lot more than a regular blood donation. Two batteries of tests, the drugs are no joke, and the donation session is more or less a whole day affair - or two days if you're unlucky and they don't harvest enough cells the first day (I was unlucky). I don't have any regrets doing it - the impost on me was fairly trivial compared to the difference it can make for the recipient, but it's not a thing to be taken lightly.

kharak 5y ago

I personally feel that this embodies the hacker spirit perfectly. Has this service been intended to allow the donor access to his sequencing data? No. Can someone use the systems in place to get this info anyway? Yes, as it shows. The other comments mind the burden to the charities. I personally cannot agree here. After all, this is the donors data. One might even think, that proactively sharing data could increase the number of donors.

souradip 5y ago
Much appreciated, I'm glad you agree! :)
esyir 5y ago
Sure it does, in exactly the same way running crypto on Ci does too.

ineedasername 5y ago

An importing distinction: The author did not get himself sequenced. He had genotyping. Genotyping basically picks out a few specific data points. Sequencing reads an entire piece or entire genome completely. From a health perspective, genotyping pulls data points that we already know can be markers for something significant. Sequencing gets a lot more data, and would sort of be "future proof" against the need to do further testing if new markers were identified you can just look at the data already gathered. Otherwise you'd need to get Genotyping done again.

souradip 5y ago
This is very true, and genotyping just the HLA/KIR loci won't tell you much about all the other genes that are important for health. However, the HLA typing is at least a start (and a free byproduct of signing up to donate stem cells) to introduce you to the rabbit hole of personal genomics! :) This is also slightly different to the (linkage-disequilibrium-based) SNP arraying done by other genotyping places, since the HLA locus is fairly widely researched in its associations with infection and (auto)immunity!
- ineedasername 5y ago
  Oh absolutely... It's a lot more expensive for sequencing, so there's no reason not to take a cheap option that at least gets you checked against known issues.

cblconfederate 5y ago

dont do this. you can sequence yourself from Dante labs (an italian company IIRC) which will give you all the data of 30x sequencing including the raw reads for like $200. The problem is -- i don't know what to do with the data as i havent had the time to do anything.

souradip 5y ago
You can sequence yourself properly (and it's more information that way), but this way you can get called upon to donate if you're a match for someone somewhere in the world!
- cblconfederate 5y ago
  shouldn't you be able to match yourself (at least partially) by uploading your data somewhere?
  - toomuchtodo 5y ago
    Ideally, non profit organizations around tissue sourcing provide a mechanism to ingest raw genotyping data [1] from providers through an auth flow for those who have previously been sequenced or don’t want to burden the charity (if a donor can afford it) with the sequencing cost. If one could “one click” share their genotyping from from a sequencing provider, I imagine you’d see an uptick in coverage for donor sourcing across the populace. The data is already out there. [1] https://customercare.23andme.com/hc/en-us/articles/212196868-Accessing-Your-Raw-Genetic-Data https://customercare.23andme.com/hc/en-us/articles/212196868...
- redis_mlc 5y ago
  > you can get called upon to donate Dude, calm down. Donating bone marrow is probably ok, but note that before donating a kidney, understand that can affect your health and life expectancy. That was not told to past donors, but it's a thing. (As you get older, your organ function decreases from 100% (or 200%) to less than 100%, so losing a kidney affects older people. In China, people in banned religions are "volunteered" for double-lung and heart transplants, so it also matters what country you're in. Their transplant science is based on 28 year-olds, so if you're several years younger or older, you should be good unless you have a rare typing.

Zababa 5y ago

Fun fact: getting a DNA sequencing is illegal in France and is punishable by a 3750€ fine. I find this frustrating that I can't legally access my own DNA.

smegger001 5y ago
Why would they make that a law? Please say there are medical/research exemptions at least?
- cblconfederate 5y ago
  afaik it was to prevent paternity tests
  - smegger001 5y ago
    What???? Why would France not want paternity tests? Did they just watch 'Maury' to much and descide to nope out on this or something? Because it, naively perhaps, seems to me like paternity test are a good thing on a societal level. Makes it easy to hold deadbeat fathers accountable. Proof of paternity can be used to for single mothers to demand child support. and in cases divorce due to infidelity can be prevent men from having to pay for other mens children.
    - skocznymroczny 5y ago
      I think it's a backwards logic of how paternity tests mean you "don't believe women" and thus are oppressing them. Completely ignoring the plight of men paying for children which aren't even their own.
- user982 5y ago
  The ban is apparently to prevent access to paternity testing. Medical/scientific/judicial purposes are exempted.
dekhn 5y ago
You mean DTC DNA tests are illegal. DNA sequencing of humans is not. https://www.fiercebiotech.com/it/france-plans-745m-investment-to-build-235-000-genome-a-year-sequencing-operation https://www.fiercebiotech.com/it/france-plans-745m-investmen... and I didn't have to look hard to find papers published by French authors in French journals that show they are sequencing humans in France.

aj7 5y ago

I wouldn’t get sequenced in America with the fascists so close to control.

renewiltord 5y ago
I actually regretted donating because of this very reason. If I’d thought about it I wouldn’t have. But the bethematch.org marketing material really tugged at the heartstrings. Never again, though.
- Ruthalas 5y ago
  Out of curiosity, why 'never again'? If your concern is that your genetic information is no longer entirely private, wouldn't continuing to act as a donor cause no /further/ harm? (They aren't getting anything they don't already have I guess.)
  - renewiltord 5y ago
    Ah, for a couple of reasons: * They need perfect information retention for refreshing to be useless. I don't think they have that. * I didn't intend to refer only to them. Not going to donate ever again. That's just an information proliferation thing. It's sort of like how I know that my SSN is out there because of Equifax, but I still don't post it on gas station bathrooms with other info.
dekhn 5y ago
I had my genome sequenced and it's uploaded to the web with my name attached. Can you articulate a specific concern?
- aj7 5y ago
  That’s easy. A government decides to collude with healthcare-for-profit. So they allow any provider to demand your genetic sequence. As things are discovered, they price your healthcare accordingly, economically disadvantaging you based on your genes.

cblconfederate 5y ago

There's no reason why we don't have sequencing for everyone at this point. Just imagining the opportunities we are missing here because of a) the US inane insurance system and b) the irrational technophobia of EU. It's 2021 and we 're not allowed to use our SNPs to prevent illness

hentrep 5y ago
Is data privacy not a valid reason?
- whatshisface 5y ago
  A lot of people would be willing for sequences to exist if they were treated like the medical records they are, and not as a startup's fungible data asset.
- cblconfederate 5y ago
  Are people's medical records private?
  - croes 5y ago
    Yes
    - cblconfederate 5y ago
      Then DNA can be private too (To be clear here in europe medical records are held by healthcare services, but they are protected. They are not private property tho)
croes 5y ago
Once a genetic condition is found, your insurance company will exclude certain treatments or skyrocket your premiums.
- cblconfederate 5y ago

tryonenow 5y ago

It's hard for me to believe that there is still no way to get your genes sequenced anonymously. There has to be a big enough market for a startup to do so without storing and selling "anonymised" data, right? Is it really that expensive with modern tech to sequence a person's genes and compare against an existing database? I'd pay a good deal extra to 23&me if they'd be willing to take my sample without identifying information and return my results via an [throwaway] email address.

ImPostingOnHN 5y ago
You can provide fake info to 23andme.

danellis 5y ago

> NB: Some journal websites find it difficult to display the asterisk and so they replace it with a w - so HLA-Cw04 and HLA-C*04 both mean the same thing. Ironically, this comes right after the line where his own website rendered the text between the asterisks as italic.