"56% of 500 people we interviewed said they are not willing to participate in the genomic revolution because they are concerned with their privacy" Daniel Uribe, Founder of Genobank
More and more people are curious to know about their ancestry, epigenics, personalized medicine and risk factors to future diseases such as cancer. In the last few years, millions of people have bought their DNA studies through companies such as Ancestrydna or 23andme. What is not clear to them is that they are giving these DNA companies their consent to sell this information, for example, to Pharma companies, who promise to use this information to make better medication. But how can we be assured our personal information is kept private? The good news is that 99% of humans have not been sequenced yet, so there is time to fix this.
I met Daniel at a Blockchain conference here in Valencia. I was pregnant and I wanted to know more about the anonymity protection for sperm and egg donors. I bought sperm from a non-anonymous donor in the US and I wanted to understand more about how much protection goes around this kind of thing. Some egg or sperm donors choose to be anonymous and others are ok with being “non-anonymous”. But is their anonymity really protected now that you can get your DNA matched with your biological relatives through these DNA service companies?
Genobank came to offer privacy over your personal information in this puzzle.
And that’s what Daniel and I are talking about in this episode of the “inspiring careers podcast”. He tells me why he left Mexico to live in Palo Alto, California. And how he decided to invest in a higher Education going to schools such as IPADE, Singularity and Stanford.
[3:24] DNA Kits. What’s the problem with them, and how Daniel wants to solve it using cryptography and blockchain.
[8:54] How DNA companies work today, profiting both from private clients and pharma companies.
[10:54] How can companies assure anonymity? The role of GDPR in the future of DNA data processing.
[13:53] The world of possibilities that opens up with a DNA data market.
[16:59] The threat DNA companies have with the new GDPR regulation.
[19:32] Are pharma companies developing better technology for our lives? The ethical questions of the profits.
[23:03] The key question is: how to make your data secure and usable?
[27:10] Gene Therapy: Editing our genes with CRISPR to eliminate diseases or to change embryos. Pricing and Risks.
[38:14] How companies analyze your data. Why Daniel focuses in the Latin American market.
[43:38] The donors side: anonymity and traceable data.
(xxx) In the end we’ll have two groups: the elite companies who care and offer privacy options and the bigger mass open ones who will serve those who are uninformed or want to pay less.
(xxx) soon every one will be able to discover their biological origin in a decentralized way, placing your genomic info in an encrypted way, without exposing yourself, but finding your relative. Both will have to consent before they are matched"
[52:10] Why move to Silicon Valley?
[56:58] Stanford and Singularity. Investments in education. His point of view
[59:54] Career choices he made. having a job x having a startup
[1:12:02] Personal and company future in 5 years.
Quotes
[05:45] "your credit card, your debit card, or PayPal account is not private in the sense that it is attached to your name, address, ID."
[24:38] "Only 1% of the genome is necessary to understand our ancestry."
[55:43] "I always chose to invest in knowledge. That's my savings account."
LINKS