8 ms·

I'm really curious about what I could learn by getting my DNA sequenced, but I'm worried about my rights to not have it recorded and shared without my consent i

by m12k 5y ago

I'm really curious about what I could learn by getting my DNA sequenced, but I'm worried about my rights to not have it recorded and shared without my consent if I got someone else to do it for me - so any advance toward an affordable home test setup is very welcome.

biophysboy 5y ago
Its only valuable if somebody also interprets it for you, such as telling you whether you have a genetic predisposition for certain diseases.
- DoctorOW 5y ago
  Is that not something software can theoretically provide?
  - jacquesm 5y ago
    Your DNA can tell you a lot about what could happen, but not about what is happening.
- m12k 5y ago
  One of the other comment threads indicates that the data, that you need to do that kind of annotation of the sequence, is to some extent available for home use as well: https://news.ycombinator.com/item?id=29695449 https://news.ycombinator.com/item?id=29695449 I'm really hoping someone will work on an open source "23andme@home" solution that ties all this together in an accessible way.
  - rumblerock 5y ago
    Years ago I used Ancestry, then requested the .txt file and asked them to delete it from their records. Uploaded it to run a report at https://promethease.com/ https://promethease.com/ that cross-references your SNPs against the existing body of genetic research. The results have been pretty astounding. I found markers that pointed to poor response to a specific blood thinner my grandfather was put on before he passed. Currently I'm researching the cluster of Bipolar / ADHD / SAD symptoms I experience that all seem to trace back to a certain genotype of circadian rhythm genes I have (thank you, Sci Hub). To boot, some of the studies I've come across have been done on Han Chinese populations that match my descendance. Perhaps going too far down this rabbit hole poses a self-diagnosis risk, but the correlations to my family history and my own life experience working with doctors to diagnose and treat symptoms are pretty undeniable. And given that your run-of-the-mill psychiatrist is going to treat you off of a DSM checklist, I feel much more confident knowing there have been genomic studies to back things up, since my doctor isn't up to date on this research, and finding one that would be will be difficult and expensive. I've shared the papers with my doc and he's been supportive, sometimes I feel like I should be getting a discount on services rendered.
    - ClumsyPilot 5y ago
      >"poses a self-diagnosis risk" Self-diagnosing is not the problem it is made out to be - I live with my symptoms 24/7, doctor sees me for 5 minutes. The amount of times doctors have missed fairly clear sign of trouble in my family is disturbingly high. A simple procedure, done in time, would have saved two people I know. Unfortunately our educational system teaches you about mitochondrion, but not the practical difference between ibuprophene and paracetomol, or CRP.
- refurb 5y ago
  That's Prometheus, no? They got acquired however, but prior to that you could upload data anonymously and then browse the analysis. It was very rough though, just linking sequences to risk, but a lot of it was inconclusive.
adabaed 5y ago
Imagine insurers refusing to give you a service due to your predisposition to certain diseases...
- foobarbecue 5y ago
  If you haven't seen Gattaca, you should
  - adabaed 5y ago
    Yeah super good!!
  - haihaibye 5y ago
    There should be a directors cut where the mission fails because of Vincent's hidden heart condition. Gattaca shows eugenics has been so vilified that the audience will root for a character who selfishly commits fraud, risking lives and scientific progress for his own vanity. The really scary fact is that there would be no need for a police state and segregation. The genetically enhanced would just completely dominate an open and fair competition.
    - est31 5y ago
      Gattaca shows a society in which eugenics, in hopes of creating a shortcut for people who have supposedly the better genes, devolved into a society where someone who did not have genetic augmentation could outcompete a whole bunch of genetically augmented people. In the movie, either the genetic augmentation didn't work (as well) as expected, or their advantage caused the augmented people to become lazy because they got covered in undeserved status no matter how little or much they worked, as everything depended on which genes they have been "bred" for. Then someone with supposedly bad genes could run circles around them just by working hard. Maybe some mixture, e.g. in order to protect those kids who fail at the task they have been "bred" for from considering themselves failed humans, gattaca's society adopted this model where they shower all kids in status who have the right genes. Maybe it's not the kids who are being protected but the companies selling the augmentations.
    - 5y ago
dekhn 5y ago
Note that you are literally shedding identifiable DNA from your body at all times and a truly motivated adversary would have no problem obtaining enough sample material to do high quality sequencing.
- tgsovlerkhgsel 5y ago
  One of the key differences is that in the case of the DNA sequencing services, you're agreeing to ToS that allow them to abuse your data (and thus indirectly the data of any of your blood-relatives), and you directly tie the data to a name and address.
- shukantpal 5y ago
  At scale?
  - dekhn 5y ago
    Sure. I've worked with and know people who could carry this out at scale, although obviously individual sample collection isn't highly scalable. Edit: I used to help Google fund researchers like Joe Derisi and others who develop technology to do this, and some of the people I worked with in my academic career are quite good at identifying serial killers from 30 year old DNA. If you're downvoting because you think I'm making this up, you're wrong. If you're downvoting because you don't think large-scale individual detection using genetic sampling of the environment is possible, you're wrong. If you're downvoting because you think you couldn't do a whole genome sequence of an individual using a sample collected in the wild, you're wrong. If you're downvoting because you think this is a terrible idea (morally, ethically), that's fine but I didn't say anything about my own moral or ethical beliefs about this. It's simply factually correct to say that large-scale individual sample collection (at order tens of thousands, if not hundreds of thousands of individuals in a country the size of the US) is possible. All the technology is there to do this.
    - jcims 5y ago
      It seems very unlikely to me that there isnt at least *some* genetic information that would be of direct value in advertising. Like if Google took five years of personalized ad performance info and filtered that through the associated individual’s known DNA to develop a predictive model.
Method-X 5y ago
When I had 23andme sequence my DNA, I used a fake last name and pre-paid credit card.
- amelius 5y ago
  Uh yeah, but you logged in from an IP address which Google already tied to your real name.
- albertgoeswoof 5y ago
  But if enough of your relatives get sequenced, they’ll know who you are anyway
- authed 5y ago
  If your family members got it done with their real name, they will be able to create a link.
lostlogin 5y ago
It’s out the bag now - you can be identified via relatives DNA. https://www.latimes.com/california/story/2020-12-08/man-in-the-window?_amp=true https://www.latimes.com/california/story/2020-12-08/man-in-t...
- dataflow 5y ago
  I don't think that implies the increase in risk would be negligible, which was the parent's point.
Gatsky 5y ago
It’s not exactly DIY but there are in theory ways to ‘encrypt’ your DNA before it gets sequenced. Something like amplifying/enzymatically modifying the DNA in a way that changes the sequence which you can undo computationally once you get the data back.

by m12k 5y ago

biophysboy 5y ago

Its only valuable if somebody also interprets it for you, such as telling you whether you have a genetic predisposition for certain diseases.

DoctorOW 5y ago
Is that not something software can theoretically provide?
- jacquesm 5y ago
  Your DNA can tell you a lot about what could happen, but not about what is happening.
m12k 5y ago
One of the other comment threads indicates that the data, that you need to do that kind of annotation of the sequence, is to some extent available for home use as well: https://news.ycombinator.com/item?id=29695449 https://news.ycombinator.com/item?id=29695449 I'm really hoping someone will work on an open source "23andme@home" solution that ties all this together in an accessible way.
- rumblerock 5y ago
  Years ago I used Ancestry, then requested the .txt file and asked them to delete it from their records. Uploaded it to run a report at https://promethease.com/ https://promethease.com/ that cross-references your SNPs against the existing body of genetic research. The results have been pretty astounding. I found markers that pointed to poor response to a specific blood thinner my grandfather was put on before he passed. Currently I'm researching the cluster of Bipolar / ADHD / SAD symptoms I experience that all seem to trace back to a certain genotype of circadian rhythm genes I have (thank you, Sci Hub). To boot, some of the studies I've come across have been done on Han Chinese populations that match my descendance. Perhaps going too far down this rabbit hole poses a self-diagnosis risk, but the correlations to my family history and my own life experience working with doctors to diagnose and treat symptoms are pretty undeniable. And given that your run-of-the-mill psychiatrist is going to treat you off of a DSM checklist, I feel much more confident knowing there have been genomic studies to back things up, since my doctor isn't up to date on this research, and finding one that would be will be difficult and expensive. I've shared the papers with my doc and he's been supportive, sometimes I feel like I should be getting a discount on services rendered.
  - ClumsyPilot 5y ago
    >"poses a self-diagnosis risk" Self-diagnosing is not the problem it is made out to be - I live with my symptoms 24/7, doctor sees me for 5 minutes. The amount of times doctors have missed fairly clear sign of trouble in my family is disturbingly high. A simple procedure, done in time, would have saved two people I know. Unfortunately our educational system teaches you about mitochondrion, but not the practical difference between ibuprophene and paracetomol, or CRP.
refurb 5y ago
That's Prometheus, no? They got acquired however, but prior to that you could upload data anonymously and then browse the analysis. It was very rough though, just linking sequences to risk, but a lot of it was inconclusive.

adabaed 5y ago

Imagine insurers refusing to give you a service due to your predisposition to certain diseases...

foobarbecue 5y ago
If you haven't seen Gattaca, you should
- adabaed 5y ago
  Yeah super good!!
- haihaibye 5y ago
  There should be a directors cut where the mission fails because of Vincent's hidden heart condition. Gattaca shows eugenics has been so vilified that the audience will root for a character who selfishly commits fraud, risking lives and scientific progress for his own vanity. The really scary fact is that there would be no need for a police state and segregation. The genetically enhanced would just completely dominate an open and fair competition.
  - est31 5y ago
    Gattaca shows a society in which eugenics, in hopes of creating a shortcut for people who have supposedly the better genes, devolved into a society where someone who did not have genetic augmentation could outcompete a whole bunch of genetically augmented people. In the movie, either the genetic augmentation didn't work (as well) as expected, or their advantage caused the augmented people to become lazy because they got covered in undeserved status no matter how little or much they worked, as everything depended on which genes they have been "bred" for. Then someone with supposedly bad genes could run circles around them just by working hard. Maybe some mixture, e.g. in order to protect those kids who fail at the task they have been "bred" for from considering themselves failed humans, gattaca's society adopted this model where they shower all kids in status who have the right genes. Maybe it's not the kids who are being protected but the companies selling the augmentations.
  - 5y ago

dekhn 5y ago

Note that you are literally shedding identifiable DNA from your body at all times and a truly motivated adversary would have no problem obtaining enough sample material to do high quality sequencing.

tgsovlerkhgsel 5y ago
One of the key differences is that in the case of the DNA sequencing services, you're agreeing to ToS that allow them to abuse your data (and thus indirectly the data of any of your blood-relatives), and you directly tie the data to a name and address.
shukantpal 5y ago
At scale?
- dekhn 5y ago
  Sure. I've worked with and know people who could carry this out at scale, although obviously individual sample collection isn't highly scalable. Edit: I used to help Google fund researchers like Joe Derisi and others who develop technology to do this, and some of the people I worked with in my academic career are quite good at identifying serial killers from 30 year old DNA. If you're downvoting because you think I'm making this up, you're wrong. If you're downvoting because you don't think large-scale individual detection using genetic sampling of the environment is possible, you're wrong. If you're downvoting because you think you couldn't do a whole genome sequence of an individual using a sample collected in the wild, you're wrong. If you're downvoting because you think this is a terrible idea (morally, ethically), that's fine but I didn't say anything about my own moral or ethical beliefs about this. It's simply factually correct to say that large-scale individual sample collection (at order tens of thousands, if not hundreds of thousands of individuals in a country the size of the US) is possible. All the technology is there to do this.
  - jcims 5y ago
    It seems very unlikely to me that there isnt at least *some* genetic information that would be of direct value in advertising. Like if Google took five years of personalized ad performance info and filtered that through the associated individual’s known DNA to develop a predictive model.

Method-X 5y ago

When I had 23andme sequence my DNA, I used a fake last name and pre-paid credit card.

amelius 5y ago
Uh yeah, but you logged in from an IP address which Google already tied to your real name.
albertgoeswoof 5y ago
But if enough of your relatives get sequenced, they’ll know who you are anyway
authed 5y ago
If your family members got it done with their real name, they will be able to create a link.

lostlogin 5y ago

It’s out the bag now - you can be identified via relatives DNA. https://www.latimes.com/california/story/2020-12-08/man-in-the-window?_amp=true https://www.latimes.com/california/story/2020-12-08/man-in-t...

dataflow 5y ago
I don't think that implies the increase in risk would be negligible, which was the parent's point.

Gatsky 5y ago

It’s not exactly DIY but there are in theory ways to ‘encrypt’ your DNA before it gets sequenced. Something like amplifying/enzymatically modifying the DNA in a way that changes the sequence which you can undo computationally once you get the data back.