Why DeBio Is Anonymous-First: Identify Yourself Without Breaching Privacy

The case for anonymity in genetics testing to safeguard your privacy.

DeBio Network
DeBio Network

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Photo by National Cancer Institute on Unsplash

In 2016, Yaniv Erlich an assistant professor at Columbia University gave a TED talk regarding genome privacy. Erlich who was fond of hacking from a very young age wondered if he can “hack” private information from a U.S. biobank.

This U.S. biobank collects data from various parts of the country. Erlich and his team took one sample and conducted empirical research to breach the privacy of that participant. The biobank was semi-anonymous, it kept demographic data of the participant such as the participant’s state of origin and date of birth.

Using the demographic data Erlich managed to narrow the search from 320 million (the total population of the U.S. at the time) to about 20 thousand possible candidates. After exhausting all the available demographic data, he then compared the genome sample to a public database. He gathered the surnames of the matching genomes and was able to narrow his search down to one individual.

Image by Erlich on Youtube.

The Case for Anonymity in Genetics Testing

The Longing For Anonymity

After seeing Erlich’s results you might feel a sense of urgency towards privacy. As you rightly should be. The advance in technology has brought wonderful things with their own fair share of issues. One of them being privacy.

When mentioning privacy concerns the first thing that comes into mind for most people would be the Facebook-Cambridge Analytica scandal from 2018. This scandal only sheds light upon the practice of undermining privacy done in big tech companies for years, and more people are waking up (albeit a little too late) to a dystopia of our own making.

Anonymity is a precious thing. Some people might not understand how precious it is until it’s virtually too late. The practice of giving away data for free should have stopped a long time ago. Most people can’t agree on what kind of data should be kept private. As with any topic open to discussion, the fine line between privacy and transparency has never been any more complicated.

Though things are not as bad as it seems. As the first step to change is realization, more people are picky about which services to use and are more concerned about the practices being done by companies to safeguard the consumer’s privacy.

How Your Genetics Can Be Used Against You

People understand how much companies have been trying to infringe upon their privacy. The aforementioned companies like Facebook have access to your social behaviors. It knows what you like, what political party you’re most likely into, what your hobbies are, etc.

But what Facebook doesn’t have is your genetic data. This creates a hypothetical barrier between you and these big tech companies. As much as Facebook wants to know everything about your behavior, they can never be able to track you from a genetic perspective — that is until very recently.

In April 2018, a DNA test comes back matching Joseph DeAngelo to the DNA profile of the Golden State Killer. This cold case was reopened and police arrested DeAngelo soon after. Though this serves as a good example of how genetic testing can be used for justice it also entails a dystopian consequence.

But how exactly did law enforcement able to track DeAngelo after all these years? Law enforcement compared the genetic data they have of the suspect to an online database, GEDmatch. GEDmatch is a service that enables you to compare autosomal DNA data files from different testing companies.

From there police have narrowed their search to a small number of people that it’s possible to do a background check on each subject. Remember Erlich’s research?

According to Vox, genetic data can track you down from as far as your third cousin. So, if a distant relative that you probably don’t even know takes a genetic test it’s likely to be traceable back to you.

To give you more of a perspective, in the last few years genetics testing has become more popular, data has shown that the consumer genetics testing market has grown thirty-six times between 2013 and 2018.

Graph by Antonio Regalado from MIT Technology Review

So let me ask you this, what are the chances of a distant relative that you don’t know even existed participate in a genetic test? This question is not meant to make you panic, but it’s meant to inform you of how severe the situation is.

You can’t control other people, surely you know that. You most certainly can’t control people that you don’t even know exist. In the end, what we do with our genetic data does not only concern us. But it concerns our entire family tree. Imagine a time when you can be tracked by genetic data from your relatives, how private is that?

The exponential growth in the market both brings opportunities and issues. Of course, there are benefits to taking a genetics test, you can find out more about your ancestry and even find health-related issues. Genetic testing enables you to be proactive with your health.

When taking a genetic test remember that you will not only jeopardize your personal privacy but people that you don’t even know existed. It does not limit you from doing a genetic test, but you have an innate responsibility to choose a company that you trust. That practices the utmost security and anonymity.

Final Words

After reading this article, we hope that you understand the severity of your decision when taking a genetic test. You have your personal freedoms but you are also obligated to be responsible for those freedoms. Liberty is meaningless without responsibility because it would lead to chaos. Again, this article is not meant to instill panic and distress. We just want to give you a better perspective on the reality of genetic testing.

About DeBio Network

DeBio is an anonymous-first, decentralized platform for medical and bioinformatics data.

We are building a decentralized platform for your personal medical needs, starting with genetics. Our concept allows synergy between labs of all scales while guaranteeing user anonymity and sovereignty at every step of the genomic data science workflow — from sample collection, data storage, to report generation.

We here at DeBio fully understand the concern for user anonymity. Some people might say that our DNA is the most private thing we have, and we take that very seriously. Anonymity-first genetic testing should be the number one focus on all companies.

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