Privacy, DNA & Gedmatch – What you need to know, and why I believe you should upload your DNA to Gedmatch.
DNA testing and Privacy – 101
There is a lot of discussion about DNA testing and Privacy lately, and rightly so. You should understand what can be done with your DNA, what testing companies can do with your DNA, and what might happen if you upload your DNA to Gedmatch. It’s particularly important that you understand these issues if you have been entrusted to deal with another person’s test results. Whilst that is my viewpoint, I also firmly believe that uploading DNA to Gedmatch is now hugely important, and I’m going to try and persuade you to my viewpoint.
The first thing that you should understand is that you always have the right to delete your own DNA data from all the major testing companies, and to have your DNA sample destroyed. Obviously if you do so you will lose all access to your results, but still, the right is there. You also have the right to download your own DNA data, to do with as you will. You can opt out of the DNA relatives matching services that each company provide (although again, that would mean you can’t use that service).
With that covered, let’s dive into each testing companies privacy policies, and what you need to know.
Your Ancestry DNA sample & test results
Ancestry states that its lab never has access to who you are. It does this by giving you an activation code – it’s up to you to link your code with your Ancestry account in order to access your results (so make sure you keep a note of it!). Your DNA sample is securely stored, and your DNA data is stored in a secure database. Ancestry abides by the Genetic Information Nondiscrimination Act (GINA), a US act which makes it illegal for health insurance firms to discriminate against you based on your DNA.
Ancestry does have some research projects, but you have to opt-in to these, it’s not automatic. Don’t want to contribute? Just don’t opt-in.
Your Ancestry DNA Privacy Settings
Some key things here. You can make your ethnicity results and any Ancestry tree you have linked to your DNA results completely private, so no one else can see them. You could also choose not to have any tree linked to your results. This still allows you to see your DNA matches, but if your test isn’t linked to a tree, you won’t be able to take advantage of some of Ancestry DNA’s functionality including match hints and DNA circles. You can also change your username at any time; you could use an alias or a non-identifying username.
You also have full control over who you choose to share your results with (if anyone), as well as what level of control they have to those results. Viewer level is essentially read-only access, collaborator is read and limited editing access – a person can write notes, and star matches etc. Manager access means a person can delete your results and invite other people to view your results, so I would be very very cautious about extending this level of access to anyone else. For my consulting clients, I actually don’t recommend they give me access any higher than viewer level unless they specifically want me to make notes on their matches.
Looking at the flip side. If you are a person looking to uncover family members, I am going to recommend that you make your profile information very clear that you welcome messages, and preferably make your tree linked to your DNA results and public. As long as you have correctly shown living people as living, their identifying details will not be available to anyone unless you specifically give them access. Also, note that Ancestry’s messaging function is known to be ‘buggy’ on occasion, so you may wish to leave breadcrumbs in your profile as to how else someone can contact you if you really want to be contacted.
Your 23&Me DNA sample & test results
23andMe varies a bit from Ancestry, since it has a health testing service, as well as ancestry services. Either way, you have full control over your sample and can direct them to either retain it or destroy it after testing. You have full control over whether you want other 23andme customers to be able to see your account, whether you wish to have access to DNA results, share your actual chromosome match data with your DNA relatives, and whether you want to participate in its research function.
Like Ancestry, 23&Me separates your personal details from your saliva sample so there is no way that the lab can identify who you are. Any research information you submit has your genetic information separated from personal information so you can participate without worrying. DNA results and personal information are also stored separately in secure databases.
You have full control over how much of your health results you want to see, and it gives you very clear notifications before you view test results it believes may be sensitive (which can actually be a little bit worrying because it shows you the sensitivity notice regardless of whether you tested positive or negative. Not that I’m a hypochondriac at all…)
23andMe is very clear that it doesn’t provide your information to any third party without your explicit consent. It does, however, share what it refers to as ‘aggregated information’, which means non-identifying information about you.
I personally think that 23andMe’s privacy information could not be any clearer, and gives you complete and utter control.
FamilyTreeDNA’s lab is in-house, and so it does not anonymise your DNA sample. It also by default retains your sample. This is actually pretty useful; because FamilyTreeDNA has so many different levels of testing, which can be very expensive, it means you can upgrade tests as you see fit. However, if you don’t want them to retain your sample, you can request it is destroyed by contacting their customer service. You can also request deletion of your results and account by the same method.
FamilyTreeDNA is very clear that it will never share your identifying DNA data with any third party without your express consent. It also goes further and states it doesn’t currently work with any third party research firms, although it leaves open that as a future possibility.
It’s actually not possible to share your DNA results with anyone without sharing your log-on details, which is not something I like, but is good if you want your results locked down. You can also opt out of DNA relatives if you wish to. You also have full control over how much of your info you share with your DNA relatives and allows you to set the level of how close you want to participate in DNA matches, so if you don’t want, for example, distant relatives to see you in their match list, you can set it to that. If you have a tree linked to your DNA results, you can also choose whether this is viewable by your matches, and whether your ethnicity data is viewable.
My Heritage also confirms never to pass your details onto a third party without your express consent, and states that they will never sell or licence data to any insurance company.
My Heritage User Privacy settings
My Heritage does give the user the option to change all privacy settings. You can set trees to private, opt out of DNA relatives. You can make your profile unsearchable, set an alias, decide whether you want your DNA matches to see your ethnicity and chromosomal segment data.
You are also able to delete your DNA results and records at any time.
Gedmatch – what you need to know, and why it’s important to upload your DNA here if you are comfortable doing so.
Gedmatch is an entirely free volunteer-run site. It’s become a hot topic in the press this year due to widely publicised reports of crimes being solved by law enforcement using it to upload DNA profiles and find matches. Because it’s a service where you upload your raw DNA to it, you are not buying any product, therefore the use of the service is entirely opt-in. The main reason consumers use it is because you can upload your raw DNA from any other testing site, and use Gedmatch’s ethnicity and advanced DNA analysis tools. Here’s what you need to know and be comfortable with before you upload your DNA to the service.
To register at Gedmatch, you simply need a name, email address, and a password of your choice. If you want to be as anonymous as possible, simply set yourself an alias and a ‘throwaway’ email address that you have access to (for reasons I will explain later).
As soon as you get into Gedmatch you will see a very clear message explaining that Gedmatch users must be aware that their DNA might be used to identify relatives that have committed, or been the victim of, crime. It clearly warns you that you should not use the service if you are not happy with this, and also provides clear instructions as to how to delete your profile and DNA data if you wish to.
Why you should consider uploading your DNA to Gedmatch
I am going to plea that you do consider uploading your DNA to Gedmatch. Why? I recently learned about the work of the DNA Doe Project, a non-profit and entirely volunteer-run organisation that works to identify John and Jane Does – that is, unidentified bodies. To date, the DNA Doe Project has given back the identities of four Does and is actively working on several more cases. The work they do is truly incredible and incredibly meaningful. But here’s the deal. The DNA Doe Project relies on Gedmatch to do its work, which means not only would it not survive without the existence of Gedmatch, but it faces an uphill struggle if not enough identifiable matches aren’t in Gedmatch in the first place. This is how you can potentially help give a person back their name, and provide closure to their families, and frankly, I can’t think of many things that are more worthwhile than that in the DNA arena. This is why I suggest using an alias and a non-identifying ‘throwaway’ email address; that way if you end up being a key person for the DNA Doe Project, they have a way to contact you, and you can review the email before you decide if you are willing to respond.
The same is also true of resolving criminal cases which has received much wider press coverage due to the sterling work of CeCe Moore. I totally understand having concerns about being linked to a serial killer or serious sex offender, but at the same time, this provides an arena to potentially provide redress to victims.
If you’d like to find out more about the DNA Doe Project you can visit their website here. Whether or not you are comfortable with uploading your DNA to Gedmatch, if you feel called to do so, you can also donate to their cause on the website, generally, or to a specific case that you would love to see resolved.
Any questions? Do let me know in the comments, I’ll do my best to answer.