With changing times, genetic tests that offer mail-in results are the next big thing. Not only do they offer great insight into truckload of health information but also associated medical risks in exchange of human data. At-home-DNA testing kits typically involve a swab to collect saliva sample and then mailing the same to the testing company. No matter how trivial that sounds, in that small package contains your most personal data ever, i.e., genetic codes. Now, the word around this is how some companies share the genetic information with law enforcement while others sell the same to third parties following which it almost becomes untraceable afterwards. In some cases, for people who work in small firms or serve the army, it might affect their insurance premium or the ability to receive insurance for that matter.
DNA testing has been the bedrock of scientific and medical tests for decades. But direct to consumer testing kits only came into picture a few years back. The legal policies that govern and control such consumer data is still being developed. When a doctor takes your DNA sample, it gets protected by the corresponding Health Insurance Act of the country which states the limits of its usage and how it can be shared. But, when you use a consumer DNA testing kit, there’s a good chance your data is being compromised. And guess what! There is no formal policy or law in place that applies to these situations particularly.
In other words, when you use an at home DNA testing kit, you need to make sure that you have read through the company’s data protection policy. It will inform you on how the company intends to collect such data, what it intends to do with it and to what level you have control to exercise over it. If the company chooses to violate their own policies, government bodies, like the Federal Trade Commission in USA, come into the picture. Read on to find out more about how to get an ancestry DNA test and protect your data.
Put your trust in big names
In a study conducted in 2017 involving DNA testing companies, the findings showed how the company policies weren’t as assertive as deemed earlier. Some had policies laid down regarding the ways to use their website, while others weren’t clear in their indication as to how to go about dealing with personal information from a collected sample before one could actually mail it off for testing. A few big names in the business showed acceptable policies which made them more dependable and one people could actually trust.
Things to know before you sign up
The first time you set your new smartphone, the system typically asks for the your permission to track location or give access to data in order to start using the phone. Similarly, once a user selects a DNA testing kit, there are a few things he needs to disclose before he can start using the kit. Now, DNA testing companies can be a tad boring with all sort of stupid questions that you might feel totally worthless answering. However, for the sake of privacy, it is utmost important that you do so.
Apart from the questions to answer, there will be an additional agreement to sign which certifies your permission to collect and use your genetic data. This genetic data gets stripped from labels that identifies an individual(name and address for example). However, it doesn’t guarantee you total privacy moving forward. Such data is often referred to as aggregate data that is “de-identified” and is considered to be secure but still runs the risk of a person being re-identified. Although the data seeks to depict a genetic makeup that is unique and doesn’t use your name, it is under debate. For example, in the Golden State Killing case, law enforcement officials and researchers were able to track down the suspect with help of DNA data that was shared earlier for a genealogical research team. The suspect denied having used any DNA testing kit. This shows how anonymized data can actually be use to identify anyone.
How to go about deleting your data
MyHeritage and Ancestry are two big names in the business that offer dependable test results for DNA analysis. Here is a quick rundown on how to delete your data just in case you no longer feel safe with what you have shared earlier.
For MyHeritage, head down to your account and click on your name that shows in the upper right hand corner and select “Account Settings”. Next, scroll down to the bottom and click on “Delete Account”. Please note that MyHeritage happens to be a CLIA certified and it is likely that even if you delete your account they might keep safe certain personal data.
In order to delete all such data from Ancestry, go ahead and sign into your account and click on DNA to choose DNA results summary. Next, click on “Settings” and choose “Delete Test Results.” You will be prompted for your password to confirm your decision to delete all data.