Self Organizing Genomes with Real Time Consent - DNA Guide


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Advocates for self organizing genomes with real time consent . Pattern in evolution of digital humanity is aspect of life gets digitized and once it's affordable a platform emerges that allows people to:
1. Upload their data
2. Control who they share it with.

Describes a personal biological domain model that allows for industry integration based on individual ownership of raw genetic data.

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  • #slide 1 Today I was going to run you through a quick demo and then advocate for self-organizing genomes with real time consent (as a path to market for the industry).

    A genome as a data file format is far more than research or medical data, … it represents a digital human being.
    When we observe the web… we see a remarkable history of the evolution of our digital humanity and how we have rapidly embraced new technologies and shared data among ourselves on the web. I would maintain the genome is user generated content and will follow the same pattern as other user generated content (i.e. photo’s, video’s, music) on the web.

    Slide 3
    In 1992-93 Cyber Realestate was born – and it was now possible for people to own a site on the web. (DNS turned out to be a powerful tool for distributed wealth creation).

    Slide 4
    Next our digital human got mail

    Slide 5
    Then with improved encryption - our “STUFF” went digital and we started selling things with each other.

    Slide 6
    Next, the .MP3 file format our music went digital.

    Slide 7
    Then the .jpg file format with cheap digital cameras – our pictures joined the web.

    Slide 8
    Then video – and the growth of these user generated content platforms has been staggering.

    Slide 9
    We then put our social networks on line – and with Facebooks IPO..
    we learned that our personal data has tremendous economic value.

    Slide 10
    The pattern is simple, a part of our lives gets digitized and once the technology becomes affordable a platform emerges that allows people to
    Upload their data
    Control who they share it with
    And it scales to hundreds of millions of users.
    This is what the web does naturally – and it can create a path to market for the molecular diagnostics industry if it participates in creating platforms that allow people to upload their data and control who they share it with.

    Slide 11
    So I’d encourage the people in this room to embrace and encourage the notion that individuals own their raw genome.

    Slide 12
    And to design platforms that let people control who they share their raw data with. The good news is that people are given tools that allow them to control sharing – they do.

    Slide 13
    Here’s a list of some of the different routes that 2 billion genomes could join the web in ten years. We don’t know which of the mechanisms will be most dramatic – it might be people use their genome to turn themselves into an online gaming avatar –and that’s how we get to 100’s of millions of users. Or it could be a NGO launching a genomic research effort in Africa utilizing cell phones.

    * Genomes could transform the web – possibly with individuals converting themselves into a node on the network and placing the rest of their user generated content under the own domain.

    Slide 14
    So.. Here’s our current situation – where there’s no data interoperability and there’s pressure building up in this system. The question is will this be replaced by a facebook for DNA or some sort of biological domain service (where people choose a trusted entity to register their biological domain with, they can move their data and control access to their information)

    Slide 16
    We need tools that provide transparency and cultivate both trust and understanding (and this is for the industries own good).

    Those working with personal data need to anticipate a time in the near future when they will be subject to audits to prove authorized use. At some point in the future we could see the emergence of digital human rights – with entities monetizing big data without real time consent being faced with huge liabilities.

    Slide 17The demands and expectations of the patient has changed, the new patient is expected to take more responsibility for their own health care, and they’re increasingly tech savy and know their personal data has economic value.

    Slide 18If we create tools that provide physicians and patients master and control over these genetic datasets, it will help market adoption and we’ll be able to leverage the power of the web to allow for fine grain connectivity between those seeking information and those providing it.

    Slide 19
    We saw with windows that simply putting a picture and icons on top of code can help drive user adoption.

    Slide 20
    By converting each base pair into a programmable graphic object with an API – then molecular diagnostics could be like iphone apps – with there being economies of scale, ease of market access.

    Slide 21
    One of the benefits of mapping annotation with a rating is that organizations could setup policies --- such that a test with a quality of science score of A and medical utility rating of four stars would be eligible for reimbursement.

    A platform such at this would allow molecular diagnostic firms a much more rapid return on their investment with users having access to the latest interpretation in near real time.

    Slide 22
    We need an infrastructure that can scale for all of a persons health data for years to come.

    Here's a grand slam of electronic health records …
    Persons DNA values are used to create a unique user account and prove their ownership over the dataset.
    Their health record has their genome
    And a representation of their human form and gene expression data (with the patient managing access).

    Slide 23
    In closing –– the courts in the US are likely going to decide an individual owns their raw genetic data and has a right to privacy over that dataset. If not in the US then in some other country and genomes will migrate there. In fact – the countries with functional health care systems are more likely where a genome platform will take hold.

    For that reason it would be good for the industry to proactively help design platforms based on the notion of self organizing genomes with real time consent. If we let the web do what it does naturally … then we’ll see not only a path to market – but very sustainable, robust research capabilities emerge as well.
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Self Organizing Genomes with Real Time Consent - DNA Guide

  1. 1. Self Organizing Genomes with Real Time Consent Alice Rathjen, President, Founder DNA Guide, Inc. All rights reserved 2012
  2. 2. GenomeDigital Human Being
  3. 3. The Evolution of Digital Humanity Molecular Electronic Next Generation Social Networks Diagnostics Health Records SequencingPattern: TechnologiesPeople upload/create data andcontrol who they share it with. 1992 2012
  4. 4. Imagine…. The power of Self- Organizing Genomes
  5. 5. The advantages ofReal TimeConsent
  6. 6. 2 Billion Genomes inElectronic 10 Years? Molecular Next Generation Social Networks DiagnosticsHealth Records Sequencing Technologies2012 2022 Research Governments/Passports Electronic Health Records Patient Groups Ancestry Gaming (DNA Avatars) Biometric Access/ E-Commerce Online Identity Services Citizen Science Non-Govt Health Organizations Disaster Response / Epidemics
  7. 7. The Industries Problem... No Path to Market Genetic Data Explosion Huge investment in Personalized Medicine Sequencing Technologies and INSURANCE Molecular Diagnostics Consumers/ Pharma / Health Patients Clinical Services R&D Trials Regulation, Privacy, Ease of UseWill we see a Facebook for DNA or Biological DNS - where peoplechoose an entity to register and host their genome?
  8. 8. Regulation
  9. 9. Problem of Fear and Ignorance ATA T T A C G C G
  10. 10. The Patient Has ChangedDoctor, it hurts Doc, I was bornwhen I do this this way
  11. 11. New Path to Market? C T G Those A ProvidingConsumer/ ValuablePatient Controls InformationAccess To Their and ServicesDNA via Real Get RewardedTime Consent
  12. 12. Genome Browsers &Non-Scientific Users (Mitochondria)
  13. 13. Solution is to Manage Interpretation and Access Down to the Base Pair Level
  14. 14. Technology can Enable Dynamic Regulation & Compliance Information Category RatingQuality of Science (Graded) A,B,C,D,F(by Scientific Community) W = Withdrawn I = IncompleteMedical Utility (Five Star Rating)(by Health Care Providers/ Payers) (Movie Rating)Viewing Risk E=(Genetic Counselors, Ethics) Everyone, PG = Physician Guidance R= Restricted
  15. 15. Building the Scaffolding for Future Personal Biological DataGrand Slam of Electronic Health RecordsPatient as Owner Map of Your Map of Your Security Token Genome BodyDNA sample used to create “Google Maps” for your genome Medical records, images andpatient centered universal with the ability to manage gene expression data to behealth record based on real interpretation and access down to linked to a map of the yourtime consent. (Patient the DNA base pair level. Convert human body and to genomicsubmits DNA sample to prove $1,000 genome into 2 minute location.ownership , receives login to genome at the point of care.setup user accounts).
  16. 16. Navigating Genetic Data Privacy, Regulation and Ease of UseAlice Rathjen, President, Founderalice@dnaguide.comMethod for preparing and using personal and genetic profilesDNA Guide, Inc. All rights reserved 2012