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 DNAcommons.com and .org.   My hope is some crowdsourced effort will strip me of my current petty dictatorship.   

Decree: 

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).

Sub-Categories 
- 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.

AR 

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" http://dnatimes.blogspot.com/2011/01/year-in-life-of-entrepreneur-2010.html thanks again.

Alice Rathjen
Founder, DNA Guide

Friday, May 13, 2011

Possible Solution for Managing Worlds Personal Genetic Data - World DNA Day, Dalian China April 2011 - DNA Guide, Inc.


This talk was given April 28th at World DNA Day and Genome Day in Dalian, China for DNA Guide, Inc.. (notes were added to the slides). Proposes genetic tests be given a rating for quality of science, medical utility and viewing risk so as to facilitate the flow of genetic information in a responsible manner from the lab to the physician and patient. Explains how technology combined with public policy could enable both privacy and personalized medicine to thrive. Advocates individual ownership over personal genetic data and suggests the genome as a data format could be used to provide the foundation for digital human rights. You can follow Alice Rathjen @dnatimes or for more info go to http://www.dnaguide.com.