What are you supposed to do with your data anyway?
Discovering more about yourself and your ancestry is a compelling idea for many of us, which explains why at least 12 million Americans have had their DNA tested since 2007. That number is expected to explode as popularity rises and the price of testing continues to plummet. If you’ve taken a test, or are curious and considering it, you should know what to do with the info you’ll receive. You’re likely aware that the test will provide insight into your heritage. But what else does all this data do for you? Here are seven things to do after you receive your results.
- Check Your Settings
First things first: Check your account settings. With little federal oversight of direct-to-consumer DNA test companies’ privacy policies, securing your data is your responsibility. If you haven’t selected to opt out of research, the company has your authorization to share and sell your DNA with whomever it chooses, without informing you who is accessing your data. If you’re concerned about your privacy and your right to control your own information, make sure that you opt out of any and participation in research through these companies.
2. Understand Your Data’s Limitations
The results you receive from your test might be surprisingly underwhelming, as they were for this science reporter. Many people have their DNA sequenced in the hopes of learning about their chances of developing a disease, or at the promise of determining a child’s potential. The reality is the current limitations of consumer DNA test kits are considerable, and at the time of writing this only one company has authorization from the Food and Drug Administration (FDA) to report upon the prevalence of a handful of genes linked to diseases like breast cancer and Alzheimer’s.
3. Make a Family Tree
One thing consumer DNA tests are good for at this point is ancestry; depending on your ethnicity, the test may be able to take you back through several generations of ancestral ties. Beware that the test results will likely be overwhelming when it comes to the number of distant cousins. You may want to utilize an online family tree builder to help you make sense of the family connections you’ve received.
4. Review Your Data with a Genetics Counselor
If you used 23andMe for your test, you may receive information indicating that your genome contains variants linked to diseases including breast cancer, Alzheimer’s disease, Parkinson’s disease, and others. Possessing a genetic variant for a disease does not mean the carrier will contract that illness, and the FDA cautions consumers against using DNA test results as medical advice. If you find your results medically troubling, speak with a genetic counselor who can help you correctly interpret the test’s findings.
5. Download Your Raw Data
Your DNA data is yours, and some scientists argue it is the most valuable thing you possess. If you’re concerned about privacy, and/or you believe consumers, not companies, should choose what to do with their DNA, take control of your data. Download your raw data from the company who sequenced it, then delete your account and request that your physical sample be destroyed. That prohibits the company from sharing or selling your data, and it also removes your data from their system, which may become targets for hackers.
6. Contribute to the Research of Your Choice
Consumers’ DNA is in high demand by researchers studying genetic diseases in the hopes of finding cures. It’s an incredibly altruistic and generous act to contribute to scientific research, and it’s admirable that four out of five consumers who have their DNA sequenced then grant researchers access to it. But the reality is your DNA is valuable, and the company you used to test your DNA is generally not sharing their genomic data databases with researchers for free. Nor can they tell you how your data is being used or by whom. So how do you participate in research you care about? Find a study here, or keep reading.
7. Offer Your Data for Sale
For consumers who want to control who is using their DNA and for what research, David Koepsell and his wife Dr. Vanessa Gonzalez Covarrubias founded EncrypGen, a biotech company consisting of secure, blockchain-based data storage and the Gene-Chain DNA data marketplace for peer-to-peer DNA sharing, buying, and selling. There consumers can negotiate directly with the scientists, and elect to donate or sell their data to the research of their choice.
Creating an EncrypGen account and uploading your DNA data is free. After that, what you do with it is your choice: share it, sell it, or just keep it secure. Take control of your DNA data with EncrypGen.