Thursday, September 10, 2015

Time to start talking about data ecology?

For long time we've treated the web as it it was an infinite space.  Perhaps it's not.

Each data file format and platform simply is a reflection of some new aspect of our lives that has become digitized (our mail, photos, contacts, locations etc).   When cool new platforms emerged, we migrated to them in mass.  When these platforms became bogged down by parasitic behaviors we tolerated the inconvenience or abandoned the platform for another.  We've created a disposable web.

The problem with this pattern is that initially platforms had just fragmented parts of our lives.  Now these platforms aggregate more aspects of our lives under a single umbrella - soon having our genome coded with our intent.    Furthermore, as we move into an internet of human beings, these platforms will be tied not just to our reputation but also our physical survival.   We won't have the luxury of abandoning ourselves online.  We've in effect, run out of room for data file formats to migrate to now that we exist as human beings in time and place on the web. 

The good news is the patents for the initial data file formats of the web will be expiring soon.  Perhaps it's time to consider the ecology of data and inter-web renewal?

The web is a reflection of human behavior.  It thrives when people can find each other and interact in goodwill.    If we have to sort through landfills of  abandoned digital garbage to find each other then something wonderful will have been lost.

Alicmarie Rathjen

Wednesday, September 9, 2015

Maps, Property and Health Data

Leonard J. Kish and Eric J Topol just released a great article "Unpatients - why patients should own their own data".   Nature Biotechnology 33,921–924 doi:10.1038/nbt.3340 .

The article estimates 80,000 people a year die in the US due to poor health information flows.    This is criminal - especially in light of the $30 billion the EHR industry has had in incentives from the US government since 2010 to build health information infrastructure.

The solution proposed in the article is to have a new legal framework that recognizes a digitized human beings data ownership.     For Eric Topol, maps provide the foundation for ownership - meaning people would own the map of their location on earth over time, the map of their body and the map of their genome.     Perhaps the Supreme Court will establish a legal definition for a "digitized human being" Eric Topol and Leonard Kish describe and grant us life instead of a medical errors.

- Alicemarie G Rathjen

Tuesday, February 5, 2013

ICANN 2 - I've Gone Mad

I woke up today and decided to appoint myself as the temporary benevolent dictator of biological domain registrars.  Like all self-appointed titles.. it  means nothing!   Thank God.

Still... here's the powers I granted myself today as the current own of the domain and .org.   My hope is some crowdsourced effort will strip me of my current petty dictatorship.   


As of today... I declare there are no legitimate registered biological domain registrars.   Any entities storing, managing and distributing personal genetic data is a non-registered biological domain service.

At some point in the future... I may start to categorize entities storing and distributing datasets that constitute "digital human beings" in the following categories. 

Top Tier Category 
1). Verified biological domains - meaning the person submitting the DNA sample was witness by another person who then processed the sample to create a  genetic dataset or "digital human being".
2)  Non-verified biological domains (the DNA sample or dataset could have come from ANY source and there's no evidence the person providing the sample was the same as the person who the sample came from).

- Anonymous – meaning there’s not enough information in the dataset to potentially be re-identified with the individual.
- Automous Digital Human Being - verified dataset with fine grain real time consent (typicaly material transfer agreement required for usage including right to be subject to audits to prove authorized use).
- Research datasets having bi-directional communication between researcher & provider of the sample (with sample provider exercising
fine grain real time consent )
- Datasets created by citizen science or patient advocacy groups that are controlled by the person who provided the DNA sample  
- Datasets financed by wealthy individuals (varying levels of consent)

- Government Acquired - non consented (i.e. drafted military, prison populations, mandated government IDs)
- Government Acquired - consented (enlisted service personnel)
- Opt In - Health Care Provider dataset
- Opt Out - Health Care Provider dataset
- Genetic Datasets taken from Newborns
- Datasets taken from those in a medical crisis (vulnerable health populations, i.e. cancer, rare diseases)
- Datasets from those above 65 (eligible for medicare?) 
- Datasets taken from those who have died
- Legacy research datasets
- Datasets taken in the context of mitigating natural disasters
- Datasets taken at refugee camps (during times of political instability)
- Datasets taken from economically vulnerable populations (i.e. offered
a free service in exchange for genetic data)
- Datasets taken from indigenous populations (to be studied as a group)
- Datasets created by commercial entities in exchange for a fee
- Temporary, recreational datasets (deconstruct and become disorganized within a given time period)

Ok… there… I did it.  Any day now… they’ll take away my access to a keyboard.


Monday, January 2, 2012

The 2011 DNA Guide "Innovation Catalyst Awards!!!"

Most awards are created by those on top and handed down. This award comes from the bottom-up. It's one entrepreneurs attempt to thank all the wonderful people I met this past year and recognize their dedication to make a contribution to the world. So often innovation recognition goes to CEO's and lead investors - forgetting those who contribute to the ecosystem by being welcoming, curious and collaborative.

Criteria for the DNA Guide "2011 Innovation Catalyst Awards" is being BRILLIANT, KIND and FUN to interact with. If you don't know these folks... be sure to look for them next time you're at Ted or the Computer Museum in Mountain View. They're wonderful. Here are the true instigators of innovation who inspired me this past year:

Holley Abrams MD NASA Ames Research Center @holleyabrams
Alexandra Basford Beijing Genomics Institute, GigaScience
Vijay Chandru UNESCO
Angie Chang Women 2.0 @thisgirlangie
James Clement Androcyte @clementlawyer
Alex de Winter, Mohr Davidow Ventures
Jack Dangermond, ESRI
Jovianna DiCarlo, International mHealth Standards Consortium @imhsc
Lizzie Dunklee Health 2.0 @drytownlizzie
Scott Edmunds, Beijing Genomics Institute, GigaScience @ SCEdmunds
Jonathan Drori RBG Kew Enterprises Ltd @jondrori
Peter Francis, Casey Eye Institute
Richard Gallagher, Hopeful Monster
Kathryn Gorges Social Marketing Diva ley@socialMktgDiva
Steven Gullans Excel Venture Management @sgullans
Rebecca Hemenway FitGenes Consulting @rhemenway
Andrew Hessel Pink Army Cooperative @andrewhessel
Kevin Horgan, Soligenix
Tim Hunkapiller Discovery Biosciences
Salim Ismail, Singularity U
Reese Jones Singularity University
Steven Johnson, Ctuit Software
Hugh Keegan, ESRI
Bruce Klein Singularity U
Daniel Kraft Stanford Medical School, Futuremed SU @daniel_kraft
Frederick Lee, MD, MPH , P4 Medicine Institute @fleeMD
Deborah Marshall, Sidley LLP
Kathryn Myronuk Singularity University
Lesa Mitchell Kauffman Foundation @lesamitchell
Ayanna Monteverdi,Mendelspod
Kevin Noble, Genentech
Sharon Olexy Bytes2Insights
Jannick B Pedersen FranklinCovey @jannickBP
John Pfeffer, Pfeffer Capital
Melek Pulatkonak Microsoft @orientalist
Eric Schadt, Institute of Genomics
Abdul R Shaikh, National Cancer Institute
Marc Tarpenning Whiteboard Accelerator
Brad Templeton Singularity U, EFF
Theral Timpson , Mendelspod
Vivek Wadhwa, UC Berkeley
Antoaneta Vladimirova NextBio @antoanetavlad

Yes... this is an arbitrary award, but if you're on this list you can ask me for a favor down the road if by chance I end up wildly successful. Or, just print out this graphic and put it on your wall (we're still a lean startup).

For those who were kind to me last year "DNA Catalyst Awards 2010" thanks again.

Alice Rathjen
Founder, DNA Guide

Sunday, March 6, 2011

#6 Reflections on Ted 2011 Future Gross Impressions

Mono art – (one person art of one art form having multiple simultaneous instances) wasn’t nearly as impressive as the single instance of art incorporating multiple individuals (Johnny Cash tribute and Virtual Choir). At Ted – I found evidence of my hope that humanity is a like a flock of birds flying over a lake. We’re just starting to see our reflection and become coordinated in conscious movement. Our aggregated intent isn’t perfect but it is a start towards our becoming a responsive and responsible species.

#5 A petition I’d like to see from Ted 2011.

Whenever I go to San Francisco MOMA I’m upset that someone squandered their budget resulting in a permanent art collection that has a lot of crap. I’d like to see a petition granting Shea Hembry authority to clean-up their collection – even if that means much of the art is his and from imaginary people. Be sure to check out his Ted talk.