Do you listen to true crime podcasts? If so, you have probably heard about cold cases such as the Boy in the Box, the Lady of the dunes and Opelika Jane Doe. The common feature of these cases? These victims have all been identified using genetic genealogy (DNA) – but the story is not as simple as you might think. Especially seeing that your curiousity about what your ethnic background is like is what helps DNA testing companies create huge banks of DNA from your samples. Do you think they keep these samples to themselves? Do you think solving crimes through DNA testing has nothing to do with at-home DNS testing and companies such as Ancestry or 23andMe? You might be surprised if you dig a little deeper.
Your genetic material provides invaluable information to those handling it, and while solving these cold cases and catching perpetrators is seen as worth the price we pay, maybe paying with unrestricted access to our DNA is not as proportional to the goal we want to reach as you might think.
While many companies try to develop further technologies to unlock our DNA, and DNA testing companies such as Ancestry, 23andMe and MyHeritage make it possible for us to figure out decade-long disappearances, we forget that law enforcement, private companies and many more interested parties now know everything about us – without our consent. Our aim was just to help alleviate the pain of unbelievable tragedies, but now we have given up information about our being as a whole, in addition to our family tree, our diseases and our relatives. This is especially frightening, seeing that our society as a whole could become much more transparent – and possibly segregated, if we were to give out our genetic makeup. How could we stop this unrestricted access to our DNA from causing problems while keeping the best parts of DNA databases? I believe the answer lies in stronger regulations that protect sensitive data, especially in the US, where many of the headquarters of these private DNA testing companies are, and where data protection is given less attention than for example in the European Union.
The GDPR, an Act governing data protection across the European Union, is not named as applicable in the privacy policies of many DNA testing companies. We might think that there is additional protection in the US – but actually those laws are significantly weaker, making the infringement of this kind of sensitive personal data more easy. It may get into the hands of insurance companies, who will know about your state of health, or law enforcement might use it to identify one of your loved ones as committing a crime. While combating heinous atrocities is a noble goal, are we ready for anyone to see our ethnic background, our genetic diseases? Are we ready to live transparently, stripped bare in the name of justice? Focusing more on the data protection aspects is more important now than ever. If we wish to have our cake and eat it too – provide justice for the dead and protect the living, we should consider what measures need to be taken. It is imperative that companies providing DNA testing as well as law enforcement should be more clear about the timeframe and manner of handling genetic material. Open communication and strict regulations are necessary. We cannot and should not ask families of loved ones to give up hope of finding out what happened, but we also cannot afford to become transparent and risk possible horrible consequences . I advise every lover of true crime, every empathetic person who wishes to see crimes solved and all of us, who are curious about our genetic background to take a step back and advocate for laws which protect us, while giving law enforcement the opportunity to do their job – without any mishandling.
New, stricter laws and bodies should be set up, as we progress towards a society, where no misdeed will be left uncovered, so that we, the innocent may keep seeing crimes being discovered without our very makeup meeting the same fate.
Mónika Mercz, JD, specialized in English legal translation, Professional Coordinator at the Public Law Center of Mathias Corvinus Collegium Foundation while completing a PhD in Law and Political Sciences at the Károli Gáspár University of the Reformed Church in Budapest, Hungary. Mónika’s past and present research focuses on constitutional identity in EU member states, data protection aspects of DNA testing, environment protection, children’s rights and Artificial Intelligence.