4 ms·

I wouldn't mind paying a fair sum for a service that would: (1) reasonably guarantee that my data not only won't be distributed - but will be destroyed (on the

by drugme 8y ago

I wouldn't mind paying a fair sum for a service that would: (1) reasonably guarantee that my data not only won't be distributed - but will be destroyed (on their side) within a short time frame (2) give me access to all of the raw data and methodologies used in their analysis Does anyone know of such a service?

inetknght 8y ago
1) Pay for sequencing, get raw FASTQ or CSV files. 2) Run your own analysis. Open source industry standard software exists.
- philg_jr 8y ago
  Is this actually an option with the popular companies?
  - inetknght 8y ago
    It's not advertised as such but yes, several companies allow you to obtain the "raw data" from the sequencer. The raw data is what gets fed into the analysis software which produces relationship and heritage estimates.
  - inetknght 8y ago
    It's also worth noting that if the company sells analysis products to EU residents then GDPR may require those companies to make the raw data available to the customer anyway.
sonaltr 8y ago
same here. I really want to learn more about my past and also learn about my DNA (and all there is to learn with that data), but the invasion of privacy by such companies is just unacceptable (hence my refusal to take such tests).
_red 8y ago
The only reasonable way of achieving those goals would be to allow totally anonymous submissions. Mail in a sample and simply have a code that you keep to check on results once they are processed. The fact that none of these services allow for anonymous submission should be a huge tell about their real motivations.
- inetknght 8y ago
  > none of these services allow for anonymous submission You're incorrect. At the company I work for, which is one of them mentioned in the article, a customer pays for DNA sequencing and analysis. Who pays for it is often separate from who's being analysed. We often have customers who pay for products for their family, friends, or otherwise. The name on the DNA sample is not verified in any way shape or form (and how could we verify it beyond just billing information?) You can opt-in or opt-out of public matching. You can download your raw data anyway (GDPR requires this if you're an EU citizen). > should be a huge tell about their real motivations I would like it if you'd elaborate on this.
  - Cpoll 8y ago
    > I would like it if you'd elaborate on this. I don't have an opinion about this, but they're probably implying that the business model is the same as Google, Facebook, et. al., which is selling user data to third parties.
- drugme 8y ago
  That would help, to a degree. But ultimately any kind of DNA analysis (that exposes the raw data) is intrinsically de-anonymizable, no?
- erentz 8y ago
  Anonymous submissions are in theory somewhat feasible, albeit cumbersome. You can by the 23andme kits with the full fee paid from certain pharmacies (I think Target had them) using cash. This means you don't have to put down a credit card when signing up. I leave the rest to the reader to work out wrt anonymizing themselves while signing up to the website.
nodja 8y ago
Don't most services provide (2)? You can download the raw data. It's not your full DNA sequenced or anything, they only do genotyping, i.e. only test for genes that are known to differ between individuals, I don't think there's a consumer service that does full gene sequencing for a reasonable price.
deleted 8y ago
[deleted]
anderspitman 8y ago
Might look into Dante Labs. I was fairly happy with their privacy policies and ordered a kit during black Friday for 200USD
- elektor 8y ago
  Were you able to get the results from Dante yet? I am curious to see how they differ from 23andMe in report quality.

by drugme 8y ago

inetknght 8y ago

1) Pay for sequencing, get raw FASTQ or CSV files. 2) Run your own analysis. Open source industry standard software exists.

philg_jr 8y ago
Is this actually an option with the popular companies?
- inetknght 8y ago
  It's not advertised as such but yes, several companies allow you to obtain the "raw data" from the sequencer. The raw data is what gets fed into the analysis software which produces relationship and heritage estimates.
- inetknght 8y ago
  It's also worth noting that if the company sells analysis products to EU residents then GDPR may require those companies to make the raw data available to the customer anyway.

sonaltr 8y ago

same here. I really want to learn more about my past and also learn about my DNA (and all there is to learn with that data), but the invasion of privacy by such companies is just unacceptable (hence my refusal to take such tests).

_red 8y ago

The only reasonable way of achieving those goals would be to allow totally anonymous submissions. Mail in a sample and simply have a code that you keep to check on results once they are processed. The fact that none of these services allow for anonymous submission should be a huge tell about their real motivations.

inetknght 8y ago
> none of these services allow for anonymous submission You're incorrect. At the company I work for, which is one of them mentioned in the article, a customer pays for DNA sequencing and analysis. Who pays for it is often separate from who's being analysed. We often have customers who pay for products for their family, friends, or otherwise. The name on the DNA sample is not verified in any way shape or form (and how could we verify it beyond just billing information?) You can opt-in or opt-out of public matching. You can download your raw data anyway (GDPR requires this if you're an EU citizen). > should be a huge tell about their real motivations I would like it if you'd elaborate on this.
- Cpoll 8y ago
  > I would like it if you'd elaborate on this. I don't have an opinion about this, but they're probably implying that the business model is the same as Google, Facebook, et. al., which is selling user data to third parties.
drugme 8y ago
That would help, to a degree. But ultimately any kind of DNA analysis (that exposes the raw data) is intrinsically de-anonymizable, no?
erentz 8y ago
Anonymous submissions are in theory somewhat feasible, albeit cumbersome. You can by the 23andme kits with the full fee paid from certain pharmacies (I think Target had them) using cash. This means you don't have to put down a credit card when signing up. I leave the rest to the reader to work out wrt anonymizing themselves while signing up to the website.

nodja 8y ago

Don't most services provide (2)? You can download the raw data. It's not your full DNA sequenced or anything, they only do genotyping, i.e. only test for genes that are known to differ between individuals, I don't think there's a consumer service that does full gene sequencing for a reasonable price.

deleted 8y ago

[deleted]

anderspitman 8y ago

Might look into Dante Labs. I was fairly happy with their privacy policies and ordered a kit during black Friday for 200USD

elektor 8y ago
Were you able to get the results from Dante yet? I am curious to see how they differ from 23andMe in report quality.