My connection to genetics has always been intensely personal.
As I was growing up, I watched my grandfather slowly deteriorate due to Parkinson’s disease, a degenerative genetic disease.
He started to slouch. Instead of the confident strides he once took, he slowly shuffled, barely able to lift his legs off the floor. His hands shook incessantly, to the point where he was barely able to feed himself. Never a man of many words, it became very difficult to understand him if he ever tried to talk.
He went from a strong, sturdy man to a stooped and defeated shell of who he once was.
After he passed as a result of the disease, my uncle and father began to show symptoms as well.
Given the disease’s dominance in my family, I couldn’t help but look to the future. Was there a genetic component in our family? Would I get the disease?
I had studied Molecular Biology and Biochemistry at college in no small part due to my childhood experiences. But realizing lab bench work wasn’t for me, I soon entered the business world.
I found my way to working as a sales manager for a company that sold industrial disinfection equipment. During one of my routine business trips to Seattle, I fell very ill and was hospitalized due to an infection. They prescribed me some antibiotics and I was on my way.
Months later, I received an email from the hospital. They had been hacked, and my healthcare records were part of the data breach. They assured me they were very sorry, and wanted to offer me a free 2 year subscription to an identity monitoring system. That didn’t change the fact that my privacy was violated and personal information stolen.
This was a formative experience for me, and taught me two things:
1. Other people wanted my healthcare data.
2. Organizations who are trusted with my sensitive data are unable to protect it.
After this experience, I soon became very interested in cryptocurrencies; the anonymity they offered, and the decentralization of power they represented, but wasn’t sure how they fit in.
CONNECTING THE DOTS
Years later, there seemed to be high profile hacks every few weeks. Large companies, with BILLIONS of dollars in value, routinely compromised. And I knew genetic information would always be an attractive target due to the reams of information that could be determined about people whose DNA had been sequenced.
Since my grandfather had been diagnosed, I always wanted to be tested for Parkinson’s, but my experience having my healthcare data stolen made me very wary. I feared digitizing sensitive information about myself and having it connected to my identity.
I looked up ways to try to stay anonymous with existing DNA testing companies like 23andme and AncestryDNA, but there was always difficulty. I had to give my name, whether it was in creating the account, paying, or getting the kit shipped to me.
And on top of that those companies were hungry for my demographic data, because they could infer more things about my genes if they knew more about my health and lifestyle.
Their systems were set up to COLLECT information, because to them, that information meant more money. They provide cheap tests to the consumer to subsidize the collection of genetic data for their benefit. These firms will share your genetic info with third parties or law enforcement agencies if it suits their ends. Once other parties get your genetic data, you lose even more control.
Annoyed, I was ready to give up.
ALL TOGETHER NOW
It was amidst this frustration that Secret Sequence was born. It would be truly anonymous genetic testing.
I built a company where we NEVER require for your identity and only maintain short term records necessary for operation.
All customer related data, genetic reports and samples are destroyed within two months of their generation. We are unable to retrieve data outside that time frame.
We enable our customers to harness the transformative power of genetic testing, while ALWAYS putting their right to privacy first.
We NEVER want to know who you are. We accept anonymous payment like cryptocurrencies, and never even ask for a name if you want to pay with credit card.
And we are ALWAYS looking for ways to increase anonymity and protect our clients.
I won’t be sharing my predisposition to Parkinson’s with you all today to end this story.
However, I will say this: Secret Sequence can help people benefit from the genetic revolution with our privacy-focused ethos, and I believe we will change the world for the better.
Jason Corbiere is a certified Medical Technologist, with a background in biochemistry and molecular biology. He is cofounder and CEO of Secret Sequence Genetic Testing, which is the first Direct-To-Consumer Genetics company created with privacy and anonymity as its primary mission. Secret Sequence testing covers the areas of Ancestry, Health and Cancer, Exercise, Nutriton, Skin Care, Drug Metabolism and Personality. To learn more call 833-SECRET3 or email email@example.com.