Choose Anonymous Genetic Testing
You’re already familiar with the importance of safeguarding your online identity to protect against credit card fraud, identity theft, or other criminal activity. This includes limiting the personal information you share with the websites, apps and other services you interact with online. In the same way you can protect your genetic privacy by taking AncestryDNA or 23andMe anonymously.
Consumer genetic test providers such as 23andMe and AncestryDNA collect an especially large amount of information about you. But the privacy risks they create are far greater than simple credit card fraud. Your genetic information offers unprecedented insight into your (and your families’) health, longevity and family history, and perhaps also sexual orientation, intelligence and behavioral tendencies. What legal and illegal uses might be invented? Genetic information is already used for insurance and law enforcement decisions, what about employability? Targeted marketing? Blackmail?
Despite assurances of security, routine privacy breaches are an ongoing problem for companies of all size and type – and protecting genetic privacy is fundamentally MORE difficult and MORE vital. Best practices for protecting genetic privacy do not yet exist, and unlike banking information, your genetic identity can’t be changed nor your genetic privacy restored.
DNASquirrel advocates for ANONYMOUS genetic testing. In a nutshell, this means signing up for 23andMe, AncestryDNA or other consumer genetic test without revealing any personally identifying information. As a result, only YOU benefit from your DNA. To the rest of the world your genetic information remains disconnected from you, like unidentifiable DNA found at a crime scene.
How to Protect your genetic privacy With Anonymous 23andMe OR AncestryDNA testing
Decide on your preferred level of genetic privacy, and then follow the ‘do-it-yourself ‘ (DIY) steps below to enjoy more anonymous genetic testing.
Have a family member who is interested in taking a genetic test? Help protect their (and your) genetic privacy:
One reason why these companies request accurate customer information is to satisfy their own requirement for collecting and storing accurate information on any human biological sample that they collect and evaluate. This is a Clinical Laboratory Improvement Amendments (CLIA) federal regulatory requirement that applies to clinical laboratories, and has no bearing on you as an individual.
Your personal information is also valuable to them. The more they know about you, the better their algorithms get at identifying family trees and predicting the physical characteristics of people (ie. how you look), and the better they become at identifying and predicting health and longevity (for companies like 23andMe who also offer health reports). If you also opt-in to sharing your data with their third-party partners for research, these companies will profit from these arrangements and/or from any products derived from these arrangements. Third-party partners may also wish to contact you to participate in clinical trials.
Finally, the more complete and detailed their database, the more value it has for applications they have not yet invented (or do not yet offer), and the more valuable it is should they decide to one day sell their database and/or their company.
No. However, by signing up with one of these companies you are agreeing to their terms of service, which states that you are required to provide your legal name and address otherwise the company has the right to stop providing service to you, and to not offer you a refund.
Genetic test providers store millions of customer accounts. While they likely suspect that a small portion of them contain inaccurate or ‘fake’ information, this is obviously to be expected for any online service provider. To our knowledge these companies have not identified inaccurate client information as a serious concern for them.
Creating a suitably plausible alias will help ensure that your account is never flagged. Should the company suspect that your account does not contain accurate information about you, they may request more information, and/or decide to close your account and destroy your DNA sample. Since you should have already received your results and downloaded your raw data, losing your account would only impact you if you wished to keep your account with them open in order to receive any additional reports that the company might offer in the future.
What if I’ve already signed up for 23andMe, AncestryDNA or other direct-to-consumer genetic testing service?
You can still achieve some privacy protection by choosing the “Low” privacy option above: opt out of sharing (this is not retroactive – you can only opt out of future sharing), ask that your DNA be destroyed, delete any optional survey information you have filled out, and consider closing your account with the service provider to reduce the amount of information they have about you.
Squirrel-level security can offer you an almost completely anonymous genetic testing experience. If executed correctly, this level of security should easily protect you from foreseeable commercial and illegal uses/abuses of your genetic privacy.
Why ‘almost’? Because IF your genetic information falls into the hands of someone who wants to use it for their purposes, AND they suspect that your account information is incorrect, AND they decide to invest significant resources into finding someone who does not want to be found, they may be able to get close. This is because your genetic profile alone contains information about your gender, some indication of what you look like and how old you are, and crucially, information about your relatives (assuming like most people that you have at least one distant relative who has DNA sitting in their database) – all of which could be used to narrow down (but not confirm) your identity. Some law enforcement agencies have the resources to take an ‘anonymous’ genetic profile such as this and compare it to public or non-public genetic databases to identify family relatives. Combined with other information and public resources, this may enable them to narrow down your identity, and then combined with more routine law-enforcement tactics, to eventually confirm your identity.
Unless you are wanted by a major law enforcement agency, the biggest threat to your genetic privacy with squirrel-level security is you. Did you effectively follow the steps to mask your identity? When you downloaded your raw data, did you decide to upload it to any other website or service provider?