1

Mainly I'm interested in getting to know my ancestry, but I don't mind doing a lot of research on my own to classify it if I get raw results.

The thing that I do not want is my DNA being stored somewhere, or something associated with my name in any way stored anywhere. Is there a way to avoid that and just get the only copy of the results while being sure that the DNA sample wasn't kept as well?

I'm in Europe if that matters, but I've read you can usually send in samples. I can't afford something very expensive, but I am able to pay something (obviously, otherwise I wouldn't be posting about it).

| improve this question | |
  • Given that you don't want the third party to have your data it is unlikely they will let you use their data to assess ancestry... – rg255 Apr 22 '16 at 17:36
  • Perhaps you could try to submit the DNA with a false name and contact information, so that it cannot be associated with you. – TreeHouse196 Apr 22 '16 at 20:51
  • 2
    Have you read the Terms & Conditions of service of any companies that provide testing? I would expect privacy concerns to be prominently addressed. – feetwet♦ Apr 23 '16 at 15:31
  • 1
    @feetwet If they tell me "we treat your data with respect," it doesn't mean anything to me, especially when any ToS usually has a clause saying "ToS is suspect to change," usually with another clause saying "without notice." – Jack Apr 25 '16 at 9:28
  • @rg255 I don't need their data for ancestry, I only need my DNA info that can only obtained by using special equipment. I will do the analysis myself. – Jack Apr 25 '16 at 9:28
3

Read the TOS (Terms of Service) for each DNA service you are considering. Each service will clearly outline the privacy of submitted samples, security of the process of analysis of samples, the storage and distribution (and possible destruction) of the resulting data, and linking of personal names (or the granting of anonymity, if available) to the data. The TOS will give you enough information to determine if you are comfortable with the privacy of the service.

The TOS is a legal document; both you and the service are bound by that contract once you submit a sample and pay the fee. The TOS may outline any legal recourse you have against the company for violating the TOS.

Each service is bound by the laws of the country where it is located and the countries where it might outsource the analysis, as well as relevant EU law - since you're looking at EU based-services - to provide security and privacy. Those laws will be outlined in the TOS.

As an example, read https://dna.ancestry.com/en/legal/us/privacyStatement at ancestry.com about their DNA testing. It's an extensive TOS, and outlines US and EU law, including the Swiss Safe Harbor Framework https://en.wikipedia.org/wiki/International_Safe_Harbor_Privacy_Principles

The DNA service, of course, can't guarantee the security of the data - or your personal information - in perpetuity. Companies are sold, TOS documents change (which would have to be subsequently approved by you), data storage systems "leak" information (by insiders and hackers), and on and on.

...but I don't mind doing a lot of research on my own to classify it if I get raw results.

And, any kind of site that allows you to compare your DNA profile with others - if it is a different site/service than one that does the DNA analysis - will have its own TOS regarding the privacy of your data and the resulting metadata from comparisons to other DNA profiles.

| improve this answer | |
  • First of all, I'm not comfortable with any storage for information anywhere, whether they say it's private or even encrypted or not, so hackers or insiders or company being sold shouldn't be a problem. Changing TOS could be a problem if it's in progress of being tested. As for trusting TOS is a whole another deal. Look at Google, Microsoft and a few other companies - they do not respect their TOS for user privacy whatsoever. As for comparing my data, I would take each small piece of information and compare it myself, instead of entering the whole data, or enter it each separately. – Jack Apr 25 '16 at 9:33
1

Since the GDPR is coming up, the easy solution is now to pick any company that explicitly operates in Europe. They all have to remove your information as soon as you request it. So, the day you get the results in, you send that request .

| improve this answer | |
  • 1
    They don't have to do so if you explicitly agreed to license your data to them – Tim Lymington May 19 '18 at 12:16
  • @TimLymington: That sounds like a GDPR violation in its own right, consent must be specific and freely given. Additionally, DNA information is considered particularly sensitive, which requires that all processing must either be for the benefit of that person or society as a whole. I don't think companies can even license DNA data for commercial purposes; it's simply not an option allowed by the GDPR (article 53) – MSalters May 20 '18 at 0:19
  • Why do you think "explicit consent" is not specific and freely given? And any company can make your use of their service conditional on your granting them a license to use your data; all that has changed is that the consent has to be explicit. – Tim Lymington May 20 '18 at 18:12
  • @TimLymington: Precisely because "if". The conditional nature (no consent, no service) makes it not freely given. Note that "explicit" is a separate requirement from "freely given" – MSalters May 20 '18 at 20:25

Your Answer

By clicking “Post Your Answer”, you agree to our terms of service, privacy policy and cookie policy

Not the answer you're looking for? Browse other questions tagged or ask your own question.