I recently came across a series of comments on a Facebook post that mentioned DNA tests. Several people had mentioned their interest in taking them, along with their very real concerns about their DNA being sold to companies that could, for example, pass the information to governments and insurers.
I addressed a few of these comments and shared my experience in terms of buying DNA test for myself, my family members and a couple of clients. And I thought it would be a good idea to also write a small article about some common misconceptions around DNA tests, an explanation of how their privacy works and a few workarounds for those that still want to take tests in order to do so anonymously.
Privacy in DNA Testing: How it Works Today
The business of personal genetic-testing kits is booming. At the same time, there’s nothing more private than your personal genetic information. Although I firmly believe that these businesses’ future depends on maintaining the trust of consumers, the truth is that there currently are no iron-clad legislative protections for consumers of these products, so one has to act with caution.
Five privacy risks exist for consumers sharing their DNA with testing companies:
- Hacking. Something that all companies that have information online share.
- Sharing of information with researcher partners. Although you usually have to opt-in for your information being shared, and companies would be in breach of contract if they shared without your consent, some are not too clear about how much of the date will be made available for others. The small print can be very, very small!
- Laws not being broad enough. The business of home DNA tests is still uncharted legislative territory, and consumers have to take the companies at their word. Several groups are pushing for more restrictive measures. We’ll have to wait and see, but if this is of particular concern then it’s always good to be informed of the laws of your country (or the country from which you’re buying a DNA test).
- Law enforcement having access to your DNA. Police can subpoena for your DNA in a multitude of ways, one being through DNA testing companies. A few of them have said they would contribute, while others have been less clear.
- The company’s privacy statements changing. There isn’t much one can do about companies being sold and changing their terms, but privacy statements changing drastically wouldn’t side well with consumers, so we expect companies to stick to their promises, regardless of who runs them.
These are all real concerns that should be taken seriously. But there’s one workaround that might make you feel a little better if you still want to take a test:
You don’t actually need to have your name attached to your DNA.
Buying DNA Tests Anonymously
One of the most common issues mentioned around DNA kits is that they will forever be linked to a name, your name. This is an easy one to answer: Not necessarily!
You can buy DNA tests anonymously, meaning you don’t need to provide a name, or you can provide a partial one(a first name, a set of initials, etc.)
There are two things you might need to have in order to acquire the tests: A means of payment, and the actual physical test you will take, which will need to get to your hands (technically, your mouth!) in some way.
Acquiring and Paying for a Test
The first requirement to buy a test is a means of payment. If you buy the DNA test online, this usually means a credit or debit card, but this is not always the case. Here are some ideas on how to get tests without having them attached to your full name.
- Use a family member or friends’ card (with their blessing, of course!)
- Buy a gift credit card on Amazon (this is easier to do if you’re in the USA, and assumes you don’t have your full name on your account). You can, for example, get a credit card gift card. $100 or $200 cards should be enough for most tests. Link to buy Visa: $100, $200, Mastercard: $100, $200. In the UK, you can find these credit cards at petrol stations and supermarkets (the co-op generally sells them).
- Buy a DNA Kit directly from Amazon. There are a few companies that offer tests through this platform. For example, 23andMe has listings for their Health + Ancestry Kit and Ancestry and Traits Kit. Ancestry also offers their Genetic Ethnicity Test on Amazon too, as well as their Health + Genetic Ethnicity Test. MyHeritage (first choice in Europe) also has its Ancestry & Ethnicity Kit there. (Note: I get a small commission if you buy using these links).
- Buy kits at a genealogy event. This is how some of my friends got their DNA tests: We bought them in RootsTech London, where each of the main providers had a booth. This also offers another advantage: You can buy the tests directly, meaning you don’t need to provide a delivery address. But let’s also go through that option in case you can’t find an event near you.
Getting your DNA Kit Delivered
The second requirement is getting the actual kit sent to you. As I mentioned, one option is to buy the tests in events or conferences, where you just acquire the box with all the materials in it and only need to send back a sample. If you do need to use an address, you could do one of the following.
- Use a friends’ address (again, with their consent. In some countries, like Germany, the name on the envelope needs to match the one at your door, but this is not the case for most other places – the reason why we all get mail for people that moved out years ago!)
- Use your address but a partial or different name. For example, tweak your real name by changing the spelling, shortening it, using nicknames, adding A through Z as a middle initial, etc. Most carriers will attempt to deliver to an address regardless of the name used for that address – Most, not *all*.
- Send the kit to a delivery point that is “click + collect” registered. In the UK, this service is called Collect+ and doesn’t require a name (not affiliated).
- Get a PO Box. Some of them don’t require you to give a name, or if you do, you don’t need to provide it to the DNA company.
We’ve gone through some ideas on how to get your DNA information detached from your name.
This might be enough for some people who have concerns about privacy but are not terribly worried about their actual DNA code inhabiting the web.
If you’re interested in genealogy, the benefits might be significantly higher than the risks. DNA analysis allows you to connect with relatives and fill gaps in your family history. It’s broken a few brick walls for me, after years of being stuck.
So, if you’re on the fence, consider the current state of things as well as these workarounds so you can make the best-informed decision.
And if you want to buy a test and at the same time help us continue writing articles like this, consider clicking on the links below (we get 5% of sales, with no extra cost to you).