In an age when corporations are asking us to trust them with our genetic confidences, we generally are exchanging it for something we crave: insight into our ancestral origins, connection with unknown relatives, solutions to family mysteries, an understand or our genetic traits, or to foster a sense of cultural, ethnic or racial identity. For many, the insight far outweighs the value of the privacy we’re surrendering, and no lawyer’s warning about the hazards will deter them.
The topic came to my attention recently when I read in a Massachusetts newspaper that a prosecutor has asked us to volunteer our DNA. I have a one-word answer to suggest: Never!
Commercial DNA testing is nothing new and has become a popular way to uncover one’s family history and ancestry. Companies like 23andMe and Ancestry.com entice customers with the promise of uncovering long-lost relatives, tracing their lineage back to historical figures, and even discovering hidden genetic predispositions. While these revelations can be fascinating and empowering, there is great peril in the potential threat to civil liberties posed by volunteering your DNA to these companies.
When you submit your DNA to an ancestry testing company, you are providing them with a treasure trove of personal information. Your DNA contains not only your ancestral makeup but also clues about your health, physical traits, and even personality. This genetic data is gold for these companies, allowing them to develop new products and services, target advertising, and even partner with law enforcement agencies.
The primary concern surrounding DNA testing is the lack of control over how your genetic data is used. Once you submit your DNA, it is no longer yours. The companies you share it with own it and can do whatever they want with it, within the limitations of their privacy policies.
Law Enforcement Access
Alarming to privacy and criminal lawyers is a trend toward “forensic/investigative DNA analysis,” which peeks into the genetic blueprint of crime scene evidence, like a molecular fingerprint, to link suspects to the scene. The privacy threat extends beyond our own personal genetics because technology can now look deep into our
ancestry for links to relatives with a distant blood tie and can use our DNA fingerprint to implicate them in crimes. In other words, we may be ratting our loved ones without intending to.
Another major concern is the potential for law enforcement agencies to access DNA databases. In the United States, there is no federal law restricting law enforcement from obtaining DNA data from ancestry companies without a warrant. This means that if your DNA is in one of these databases, it could be used to identify you or your relatives as suspects in a crime, even if you have never been arrested or convicted of any wrongdoing.
The Right to be Forgotten
One of the most fundamental human rights is the right to be forgotten. This means that you have the right to control your personal information and to have it erased from the internet and other public records. However, when it comes to DNA data, this right is virtually non-existent. Once your DNA is in a database, it is there forever, with no way to truly erase it.
Privacy in Peril
The unforeseen danger to our privacy and welfare can last for a lifetime and may even endanger those we care for. Consider these additional cautions:
- DNA testing can reveal unexpected information about your family history, which may be upsetting or challenging to some people.
- The field of genetics is constantly evolving, and new discoveries could change the way we interpret DNA data in the future.
- Data leaks: Ancestry websites are attractive targets for hackers due to the wealth of sensitive genetic information they hold. Data breaches can expose your DNA and that of your relatives, potentially leading to identity theft, insurance discrimination, or genetic blackmail.
- Third-party sharing: Many ancestry websites share anonymized versions of your DNA data with research institutions and pharmaceutical companies for studies. While they claim anonymity, re-identification techniques are constantly evolving, potentially compromising your privacy in the future.
- Uncovering family secrets: Your DNA test results may reveal hidden ancestry, past adoptions, or even infidelity within your family tree. This can lead to emotional distress, family conflicts, and relationship breakdowns.
- Genetic risks: Ancestry reports often highlight health risks associated with your genetic makeup. Some of these risks might be serious and could worry your family members, even if they haven’t tested themselves.
- Genetic discrimination: In some countries, employers or insurance companies could potentially use your DNA data to discriminate against you or your relatives based on potential health risks.