How Private Are the Results of the DNA Test You Bought?

Direct-to-consumer genetic testing  services like 23andMe, Ancestry, and  MyHeritage appeal to our curiosity  about our family tree and potential  health risks we may face. Tens of  millions of people have submitted  their genetic information for testing  and analysis.  

While DNA testing can offer valuable  insights into your personal health  and ancestry, direct-to-consumer  genetic testing poses significant privacy risks that you should carefully  consider before sending your genetic  sample to a private testing company. 

Your DNA is unique to you, and it  contains personal, private health  information. Having this data  exposed to third parties cannot be  undone, and your DNA isn’t like  a hacked credit card. You cannot  cancel it and get a new one. For that  reason, protecting the privacy of  your DNA should be a high priority. 

Once you give a DNA sample to a  testing company, you may have limited control over how your genetic  data is used or shared. There are  privacy concerns if your genetic data  is shared with academic institutions  for research or sold to pharmaceutical companies for product development and marketing. 

Although companies are required to  get your consent before using your  data in research, that authorization may lead to other research companies also using it. That makes it  difficult for you to keep up with who  is using your genetic data. And, once  the data is being used by researchers, it’s unlikely you will be able to  revoke your consent. 

The Health Insurance Portability and  Accountability Act, which protects  the privacy of your health-care information, does not apply to direct-to consumer genetic testing companies  and will not protect your DNA data.  

The Genetic Information Nondis crimination Act prohibits employers  and health insurance companies  from using your genetic test results  to discriminate against you. But  insurance companies may still be  able to use genetic information to  make decisions about selling life,  disability or long-term-care insurance policies to you. 

There is also a risk that your genetic  data in company databases could be  subject to hacking or other forms of  data theft. Although companies  claim to safeguard your data, the  security measures that they use  may not always be enough to protect  against these risks. 

Before you sign up to have your  DNA analyzed, research the companies you are considering. What are  their privacy practices related to  your DNA? Do they share your data  with third parties? Do they have safe guards in place to protect your DNA  data and other personal information  from hacking and identity theft?  

Check the company’s website for  a privacy and data security policy.  Before you begin the testing, read  the policy carefully and make sure  you understand how they will pro tect your data. Privacy policies may  be confusing. If you have questions  about them, contact the company. 

Here are some specific questions to consider when reading a company’s privacy policy: 

• After it is analyzed, will your  DNA sample be stored, shared,  sold or destroyed? 
• Once you take the test, who owns  your genetic data? 
• How are your genetic data and  other personal information kept secure from unauthorized access?
• Can you delete your results  from the company’s database?
• Does the company use your  information for internal research, advertising or  other purposes? 
• Will the company share your genetic data or sell it to pharmaceutical or biotechnology companies, academic institutions or nonprofit organizations? If so, will the shared data include other identifying information such as your name or date of birth?
• Can you choose not to have your genetic data shared, sold or used for research?
• If you agree to share your information, can you change your mind later and block your information from being shared, sold or used?
• Will you be notified if the company changes its privacy policies?
• What happens to your sample and genetic information if the company is sold or goes out of business?

Be careful about opting into research through a genetic testing service. Opting in can mean sharing everything you do on the service’s site, not just your DNA information. Revealing information about your DNA also means sharing intimate information about your relatives, violating their privacy.

Don’t share your DNA results on social media. Data brokers can collect the information you share publicly on social media and sell that information for research or marketing purposes.

If you are tempted to share stories about health concerns or family ancestry with friends, find a more secure and private way to share this information.

More information on direct-to- consumer testing is available at //medlineplus.gov/genetics/ understanding/dtcgenetictesting/.