DNA Testing and Your Privacy

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Over the last few decades, research advances have made it possible for individuals to gain access to data related to their genetic material. Many companies, including Bowhead, have ventured into the direct-to-consumer (DTC) genetic testing market. Is your genetic material really safe?


The DTC genetic tests involve a sample of your saliva, which is tested to extract your DNA. Your DNA provides a map of your biology, from your disease susceptibilities to your personal traits and ancestral origins. Although these tests are usually requested because you are seeking more information about yourself, insecure genetic data can be used as a vehicle for others to learn about you. There are serious privacy concerns with some genetic testing platforms. 


In 2018, a major California cold case referred to as the “Golden State Killer” was solved when a man was arrested for the crimes. It was then revealed that the man was found after law enforcement used DTC genetic information to build a family tree of those who might have been related to the suspect. A third cousin of the Golden State Killer’s family had used a DTC genetic test and law enforcement was able to piece together the possible identity of the suspect, which was then confirmed through DNA. There is no denying that it is a great outcome, but it raises many privacy concerns.


The Golden State Killer (GSK) case shows just how much information comes from a simple genetic test. The killer never used genetic testing but was identified through a distant relative. This means that by using genetic testing, you are submitting not only your health information but that of your family and ancestors. Although solving crimes like the GSK is a valuable benefit, we must also think of how this same information could be used nefariously by hackers or others seeking to exploit this information.

Companies that make DTC genetic tests are gatekeepers of your genetic information. It isn’t as though you can just go and have your genes tested at the local pharmacy. You are dependent on the companies to protect your information and not to abuse the power they hold. Some companies provide Terms of Services that require you to agree to allow your information to be sold for research purposes or to allow government access. Being mindful of the terms you are agreeing to and the company that you choose to conduct this test is important for you to advocate for yourself and your privacy. 


At Bowhead, we want to ease your concerns by providing a DTC genetic test through blockchain encrypted data. With Genome Buddy, you own your health data. Your genetic data will only be shared for research purposes with your consent. We provide a private and safe way to learn about your health and ancestry. 


[1] https://www.nytimes.com/2018/04/27/health/dna-privacy-golden-state-killer-genealogy.html 

[2] http://cyberlaw.stanford.edu/blog/2019/11/“it’s-not-personal”-—-dna-privacy-and-direct-consumer-genetic-testing 





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