They’re in the news and all around you. Celebrities are trying them and your friends probably are too. DNA testing is gaining more and more popularity all the time.
It sounds fun, right? Who wouldn’t like to know more about their family history and their ancestors?
Who isn’t interested in what health issues the tests may uncover?
That’s why so many people are taking advantage of the tests that are offered by companies like Ancestry, Family Tree DNA, or 23 and Me.
But is your information safe when you send it away? What do you need to know before you make the decision to have your DNA tested? Read on to find out.
Why Do DNA Testing?
DNA testing can be a useful idea and a good idea for a variety of reasons. You may just be curious about your ethnicity or where your ancestors came from. It can be cool and interesting to find out that you are part French or that you have distant relatives in Indonesia.
DNA testing can also help you find out information about genetic diseases that you may carry (but that you may not be aware of). There are real cases of people finding out early about conditions that would have been serious or even fatal if they hadn’t been detected early and treated.
How Does It Work?
Almost all the testing works in the same way. You choose the company you want to use and answer some questions about yourself (and your family if you are ordering for them). At this point, you’ll choose whether you want to just have information about your ethnicity and background, or if you want to have the information about possible medical issues or markers for disease. Once you’ve made your selection and paid, the company sends you a kit in the mail.
Once you receive the kit, you follow the instructions on collecting samples. You usually collect a sample by taking a cotton swab (provided in the kit) and sticking it in your mouth and scraping it gently inside your cheek to pick up some cells. You stick the swab in a test tube (provided in the kit) and send it back to the company. Then you wait for your results!
But is Your Information Safe?
You may have heard worry or concern about “giving away” your genetic material. So is your DNA safe when you send it away? Here’s the scoop:
- The DNA testing industry is indeed UNREGULATED. This means, functionally, that no one is watching the companies to see what they do with your DNA information, but it is pretty obvious that they are storing it in order to be able to analyze it and give you the results that you ordered.
- According to the MIT Technology Review, over 100 million people will be included in the combined commercial genetic databases by 2021. That’s a lot of information in an unregulated database.
- We aren’t really sure what might happen to any of that information. This is one case where the law has not caught up to real-world practice (HIPAA doesn’t apply to DNA testing companies since they aren’t medical or insurance providers). Many fear that law enforcement, insurance companies or even employers may be able to access your DNA information without your permission or without you even knowing about it.
It is clear that some work needs to be done to work on how to handle this potentially valuable and private information. Some companies have started allowing customers to delete their data from their systems (which is only helpful if your data hasn’t been shared yet already). If you are considering a DNA service, this may be one feature to look for in a company- and if you have already used a service, you may want to go back and ask for this option.
Most consumer agencies suggest that you read everything carefully and weigh the risks. Don’t be scared off by the fine print; it is designed to be hard to read, but in this case, you will likely want to read it all to know your rights and be sure that the level of privacy that you are hoping for is the level of privacy and security that you will get when you use a DNA service.