29 Sep ICP 024 Daniel Uribe, founder of Genobank, on how to offer genetic privacy on DNA studies.
Posted at 15:13h
Daniel Uribe, founder of Genobank and I, talk about DNA studies with privacy.
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?
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 privacy protection goes around this. 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 a solution. And that’s what Daniel and I are talking about in this episode. 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.
WE TALK ABOUT
[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.
[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.”
[8:24] “You can still interact with the world of genomic services. But you didn’t disclose any personal information. In that I believe a better world in terms of privacy is being built.”
[13:53] “GDPR will be very expensive to comply to. So if you are a company processing genomic sequences you have to ask yourself many questions. Do we need to keep the data once we delivered the service?”
[24:38] “Only 1% of the genome is necessary to understand our ancestry.”
[25:30] “Cancer is a mutation in our genome. Cancer is the most personalized disease we have. There are no two equal cancers in the world.”
[33:00] “One of the biggest issues in the genomic sciences is lack of information.”
(33:06) “(…) all scientists agree: We need to sequence more humans to learn more. We know very little.”
[36:29] “Right now blockchain is a buzzword. But in a couple of years it will be just thought as a feature.”
(37:30) 56% of 500 people we interviewed said they are not willing to participate in the genomic revolution because they are concerned with their privacy.
[38:59] “We are approaching an era of 10$ genomic sequencing, but 100.000$ of a proper genomic processing and analysis (brain of scientists).”
[50:29] “I believe that will change. It will go from rules originated from the State, to rules originated by Citizens.”
[55:43] “I always chose to invest in knowledge. That’s my savings account.”
[1:00:45] “This life is a roller-coaster but one thing is for sure: I’m never bored.”