Sunday, April 21, 2019
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
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
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, August 6, 2013
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
- 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
Friday, November 30, 2012
Tuesday, January 3, 2012
The Question of Digital Human Rights
The issues of personal data autonomy need to be addressed for personalized medicine to succeed.
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
Tuesday, March 22, 2011
DNA Guide, Inc. - Tech Summary
Check out this SlideShare Presentation:
DNA Guide, Inc. - Tech Summary
View more presentations from http://www.dnaguide.com.
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. www.ted.com
#4 Best selling Author – Ted 2011 Isabel Behncke Izquierdo
The best selling author for Ted 2011 is Isabel Behncke Izquierdo. I don’t know if she’s written the book yet but rumor has it (ok… I’m starting his rumor) she’s writing a 12 step program for how to become more bonobos. It’s sure to be a best seller. Hard to know if she’ll make more off her book, her video’s or her photos. I saw a picture during her talk that could become a staple for every bedroom in the world. She’s amazing!!!
#3 Best Product Launch Ted 2011
The most successful product launch at Ted 2011 was almost a tie between T-rex chicken and electrical play dough. However, since Yara Shaban's electrical play dough showed a working proto-type – Yara Shaban wins! All you anti-sugar moms and dads – get ready to buy pounds of sugar and some small light bulbs.
Remarkable Moments #2 Most Impressive CEO Ted 2011
The most impressive CEO talk at Ted was Janet Echelman. Technically she’s an artist. But if you put her in a company or any organization with the same amount of resources as any incumbent – I bet she would kick their butt!! Be sure to watch her talk once it's uploaded at Ted.com.
I hope some world leader puts her in charge of some major problem and she accepts.
I hope some world leader puts her in charge of some major problem and she accepts.
Remarkable moments at Ted 2011 #1 Life is Sacred
I like to start with the bottom line. Heart matters.
At Ted I had lunch with Nina Tandon. She works at using electrical stimulation to grow parts of the body. I asked her what part of the body was the hardest to grow. Without hesitation she said the Heart and she then entered a sacred realm of incantations. I tried to follow her. In the end I had no memory of what she said - except the topic was her experience being with a healthy heart ATTACHED to a healthy set of lungs and contrasting that to a heart scared by stress and trauma. I was in the presence of someone who made trips to the altar of life often. She was a high priestess of life saving technology. Not for a second did I doubt her power.
I expect she’ll soon perform miracles if she hasn’t already.
At Ted I had lunch with Nina Tandon. She works at using electrical stimulation to grow parts of the body. I asked her what part of the body was the hardest to grow. Without hesitation she said the Heart and she then entered a sacred realm of incantations. I tried to follow her. In the end I had no memory of what she said - except the topic was her experience being with a healthy heart ATTACHED to a healthy set of lungs and contrasting that to a heart scared by stress and trauma. I was in the presence of someone who made trips to the altar of life often. She was a high priestess of life saving technology. Not for a second did I doubt her power.
I expect she’ll soon perform miracles if she hasn’t already.
Saturday, March 5, 2011
My Trip @ Ted 2011
What it was like going to Ted 2011
Sometimes I go to the pet store and pick a feeder fish out of the tank and bring it home for my small back yard pond. This past week, I was one of those feeder fish, having been plucked from the web and given the opportunity to attend Ted.
In December I spent about a half hour online filling out the Kaufman Foundation Women in Science Business Idea competition while my son ran wild through the house with his friends. I was stunned to later see a “Congratulations you won” email and had to look online to find out the prize --- a trip to Ted 2011.
Later I the login for who would be attending arrived and felt it was clear - Ted is about brilliant people, people with money, and brilliant people with money. I didn’t belong there. Briefly I contemplated selling my ticket and using the money to help fund my startup. Then I decided to not subvert the plans of my benefactors (Kaufman Foundation and Astia) and just go.
My original plan was study the attendees list (so that I wouldn’t walk up to a famous VC and ask them where the restroom was). I never had time to study the list. That was mistake #1. Mistake #2 was packing innocent clothes. At Ted – almost everyone wears very dark blue jeans and I just brought one pair. Mistake #3 was asking for a regular cup of coffee in the hopes I’d get a cup sooner. To get a cup of coffee at Ted you have to first listen to the beans life story (the full life story if you ask for a regular cup of coffee). Mistake #4 was not meeting nearly enough of the people there. Actually, I made many mistakes at Ted as evidenced in my ability to wander around billions of dollars for five days and managed to go home without seed funding. So I missed the money….big deal. I didn’t miss the brilliance.
Being at Ted was like sitting on the edge of the coast and out of nowhere – a whale jumps out of the water right in front of you. The encounter takes your breath away. Everything about that animal is magnificent. And then two minutes later a hawk flies close enough that you hear it wings flap and then a pack of pelicans and life just keeps happening - one breathtaking sight, sound, movement and essence after another.
Ted will upload the talks soon http://www.ted.com – but be sure to look for a fireman, electrical play dough, t-rex chicken, sexy apes, virtual choirs, silk, search becoming narrow, Johnny Cash, Khan education, wearable electronics, art from nets, paper and a person(s) who ate squirrel brains, organs to order, great standup comedy from a columnist and more.
The encounters at Ted were like seeing human beings at their most beautiful and free. I’m not a jaded person. The experience of being there went in deep. Their eye contact, thoughts and presence forced growth in me and like much growth – it was painful.
My heart, my lungs, my eyes, my ears and even the inside of my head felt swollen and tender. At the end of five days I was demolished. I also realized there are lots of brilliant people everywhere.
Sometimes I go to the pet store and pick a feeder fish out of the tank and bring it home for my small back yard pond. This past week, I was one of those feeder fish, having been plucked from the web and given the opportunity to attend Ted.
In December I spent about a half hour online filling out the Kaufman Foundation Women in Science Business Idea competition while my son ran wild through the house with his friends. I was stunned to later see a “Congratulations you won” email and had to look online to find out the prize --- a trip to Ted 2011.
Later I the login for who would be attending arrived and felt it was clear - Ted is about brilliant people, people with money, and brilliant people with money. I didn’t belong there. Briefly I contemplated selling my ticket and using the money to help fund my startup. Then I decided to not subvert the plans of my benefactors (Kaufman Foundation and Astia) and just go.
My original plan was study the attendees list (so that I wouldn’t walk up to a famous VC and ask them where the restroom was). I never had time to study the list. That was mistake #1. Mistake #2 was packing innocent clothes. At Ted – almost everyone wears very dark blue jeans and I just brought one pair. Mistake #3 was asking for a regular cup of coffee in the hopes I’d get a cup sooner. To get a cup of coffee at Ted you have to first listen to the beans life story (the full life story if you ask for a regular cup of coffee). Mistake #4 was not meeting nearly enough of the people there. Actually, I made many mistakes at Ted as evidenced in my ability to wander around billions of dollars for five days and managed to go home without seed funding. So I missed the money….big deal. I didn’t miss the brilliance.
Being at Ted was like sitting on the edge of the coast and out of nowhere – a whale jumps out of the water right in front of you. The encounter takes your breath away. Everything about that animal is magnificent. And then two minutes later a hawk flies close enough that you hear it wings flap and then a pack of pelicans and life just keeps happening - one breathtaking sight, sound, movement and essence after another.
Ted will upload the talks soon http://www.ted.com – but be sure to look for a fireman, electrical play dough, t-rex chicken, sexy apes, virtual choirs, silk, search becoming narrow, Johnny Cash, Khan education, wearable electronics, art from nets, paper and a person(s) who ate squirrel brains, organs to order, great standup comedy from a columnist and more.
The encounters at Ted were like seeing human beings at their most beautiful and free. I’m not a jaded person. The experience of being there went in deep. Their eye contact, thoughts and presence forced growth in me and like much growth – it was painful.
My heart, my lungs, my eyes, my ears and even the inside of my head felt swollen and tender. At the end of five days I was demolished. I also realized there are lots of brilliant people everywhere.
Tuesday, January 11, 2011
What I need from the FDA as an Entrepreneur
Dear FDA,
I need a path that allows genetic information to ENTER the marketplace.
I'd like for anyone planning on commercializing genetic information to be able to submit their interpretation and receive an identifier for their submission along with a rating in three areas:
Medical Utility (the 5 star rating system commonly seen for the web) .
Quality of Science (graded the same as school, A thru F with I for incomplete and W for withdrawn).
Viewing Risk (graded same as for motion pictures E, PG, R, X and NR). We can treate PG as physician guidance recommended and require certification for R and X rated information access.
Here’s an example: FDA Genetic Interpretation Test ID: FDAgi001
Medical Utility: 4.5 Stars
Quality of Science: B+
Viewing Risk: PG (Physician Guidance recommended)
Approval for a molecular diagnostic could then be dynamic and progressive - allowing for works in progress to move through the marketplace (and/or be kicked out). Entrepreneurs could build applications that applied whatever rules an organization wanted regarding reimbursement or patient engagement. The whole process of evaluating the interpretation of a persons genome could become more transparent, timely and hopefully affordable.
We want to be able to provide incremental improvements in the interpretation of a persons genome to the global marketplace in near real time.
Sincerely,
Alice Rathjen
I need a path that allows genetic information to ENTER the marketplace.
I'd like for anyone planning on commercializing genetic information to be able to submit their interpretation and receive an identifier for their submission along with a rating in three areas:
Medical Utility (the 5 star rating system commonly seen for the web) .
Quality of Science (graded the same as school, A thru F with I for incomplete and W for withdrawn).
Viewing Risk (graded same as for motion pictures E, PG, R, X and NR). We can treate PG as physician guidance recommended and require certification for R and X rated information access.
Here’s an example: FDA Genetic Interpretation Test ID: FDAgi001
Medical Utility: 4.5 Stars
Quality of Science: B+
Viewing Risk: PG (Physician Guidance recommended)
Approval for a molecular diagnostic could then be dynamic and progressive - allowing for works in progress to move through the marketplace (and/or be kicked out). Entrepreneurs could build applications that applied whatever rules an organization wanted regarding reimbursement or patient engagement. The whole process of evaluating the interpretation of a persons genome could become more transparent, timely and hopefully affordable.
We want to be able to provide incremental improvements in the interpretation of a persons genome to the global marketplace in near real time.
Sincerely,
Alice Rathjen
Tuesday, January 4, 2011
DNA Catalyst Awards 2010
So often awards are created from those on top and handed down. This award comes from the bottom-up.
One of the huge benefits of starting a company is that it provides an opportunity to engage with many brilliant people. So often when a start-up succeeds the credit goes to the Founding team (who in DNA Guide's case have incredible endurance), CEO or lead investor. As Founder of pre-funded startup ... I can tell you it's the kindness of strangers that allows a startup to succeed. It's the people I approached "cold" who put in the effort to understand something that didn’t previously exist and then offered what they could to help make it happen that mattered. For everyone who offered time, expertise and effort - thank you!
The DNA Guide Catalyst Award is intended to acknowledge the brilliant and generous people I've had the pleasure of interacting with this past year. To let 2010 pass without their gift would be a mistake and if by chance DNA Guide is a huge success....these folks can use this list as proof that I owe them a favor.
The winners on this list below appear roughly by chronology …starting with the Personalized Medicine World Conference in January 2010.
DNA Catalyst Awards for 2010
* Melanie Swan – Founder DIYgenomics.org,, for offering her own genetic data to work with.
* David Ewing Duncan for offering us his own genetic data to work with.
* Raymond McCauley, Illumina for lunch and offering his genetic data to work with.
* Rade Drmanac, Complete Genomics for spending a large chunk of his time with us at Personalized Medicine World conference and having us come in to Complete Genomics afterwards.
* Jordanna Joaquina - Founder of Access DNA (now Inheritied Health) and Ash Damle CEO of MEDgle.com for sharing the startups panel at PMWC2010.
* Thomas Li from Hoffman La Roche – for encouraging feedback.
* Roy Varshavsky, Microsoft Israel Innovation Labs for encouragement.
* Sean David from Stanford School of Medicine for suggesting he’d like DNA Guide software in a clinical setting to help get smokers to stop by viewing their SNPs.
* Matthew Hudes of Deloitte for consumer survey info.
* Lisa Thornquist, for information on the grants.
* Yelena Shevelenko – ITechomics (previously with Rosetta Inpharmatics) for sharing a ride to the airport and expressing interest in working on the project.
* Wolfgang Daum, Boston Heart Lab for the intro to Knome.
* Jorge Conde and Sundar Subramaniam for fitting in a web-ex conference.
* Tom Eddington for kind advice
* Richard Resnick, Genome Quest for reaching out to discuss collaborations.
* Nola E. Masterson and Martin Reese for encouragement.
* Remi Brouard, for tremendous endurance at BayBio round table and offering a referral to Eric Topol.
* C. Rachal Winger, K&L Gates for some fun phone calls.
* Cong-Qiu Chu, MD, PhD for wanting our software for his clinical practice.
* Nathan Lillegard of Flora Genex for suggesting DNA Guide might be helpful for plant genomes.
* Lewis Rumpler of Signature Genomics for seeing DNA Guide's potential.
* Alisha Holloway from J. David Gladstone Institutes for invitation for to give a tutorial at International Conference on Computational Systems Bioinformatics - Stanford 2010.
* Marcie Newman and Timothy Rezendes of British Consultate for lining up meetings for Bill Kimmerly in the UK.
* Ted Driscol for a pleasant meeting.
* Claire KinLaw of Northern Silicon Valley Partnership for the chance to present to Michael Brahan of Kaiser Permanente Ventures.
* Sonia Sousa of Spectro Scape for an offer of intro’s to other investors.
* Arno Boer for intro to Mark Jacobsen which led to meeting with Tim O'Reilly.
* John Boyce for offering DNA Guide a slot on the technology breakthrough panel at the Consumer Genetics Conference in Boston.
* Christopher Tsai, GenHealth for running our technology by Krishna Yeshwant at Google Ventures.
* Jeff Protentis – for the intro to Mark Boguski and coming on board as our sales rep @ 100% commission
* Paul Slowey of Oasis Diagnostics for reaching out.
* Maren Connary and Sean Chai for a great tour of Kaiser’s Innovation Facility during Health Camp.
* Mandy Gamarra and Jackie Kleinman of WISE for a fun night of pico punch.
* Rajesh Desai for some helpful walks.
* Nancy Mize for a way into Astia which opened other doors.
* Bernard Slede of HP - for putting a lot of effort into understanding what we’re doing.
* Peter Tonellato of Laboratory of Personalized Medicine, Harvard for invite to Clinical Genomics Intern Symposium
* Mark Boguski, Harvard – for letting me come speak at Harvard Med and being an advisor.
* Lauren Briere, Beth Israel Deaconess Medical Center, for valuable input on feature specs for genetic counselors and pathologists.
* Jamie Heywood, Patients Like Me for picking up the phone during our meeting and trying to reach Jason Bobe .
* Deborah Kessler – for her willingness to serve as CEO.
* Dan’l Lewin, Microsoft – for a good handoff
* George Morrison, Microsoft – for an encouraging phone call
* Jim Karkanias at Microsoft – for a meeting that made all the hard work seem worthwhile.
* Peter Southwood at Autodesk for software help.
* Lee Zhi, for encouragement to present at World DNA Day at Dalian, China.
Also these Twitter users for their "follows" and tweets:
@knome @SOLiDSequencing @TGEN @iontorrent @nanopore @sagebio @lindaavey @QB3 @23andme @dnanexus @GenomeScience @dgmaccarthur @genomicslawyer @westr @bachinksy @Eurogene @labbase @DivaBiotech @ExistenceG, @jensmccabe @DIYgenomics @EdwardWinstead, @duncande @jwoodman @gfry @GenomeScience @BrandonColby_MD @SigneBioPharma @kshameer @genomeweb_news @InheritedHealth @Sociallifeofdna @ResoundinHealth, @BayBIFX @signebiopharma @pgx_reporter @xgencongress @xgenseq @founderspace @gencounsenews @paulblaser @priscillaoppy @jdudley @biotechbythebay @debbiekennett @LaBlogga .
and a few more:
* Matthew Bolt, Indu Subaiya and Lizzie Dunklee for selecting DNA Guide to be a part of Health 2.0 Launch panel Fall 09.
* Jim Plante of Pathway Genomics for a great exchange at Health 2.0 SF.
* To Kevin Kelly and Gary Issac Wolf for the chance to present to the Quantified Self San Francisco meetup.
* Bill Davenhall of ESRI for putting me touch with SJ Camarata
* Richard Ciccarelli for his contribution of art.
For those others who reached out that I didn't get a chance to connect with ... let's try for next year!
My sincere thanks!
Alice Rathjen, Founder DNA Guide, Inc.
One of the huge benefits of starting a company is that it provides an opportunity to engage with many brilliant people. So often when a start-up succeeds the credit goes to the Founding team (who in DNA Guide's case have incredible endurance), CEO or lead investor. As Founder of pre-funded startup ... I can tell you it's the kindness of strangers that allows a startup to succeed. It's the people I approached "cold" who put in the effort to understand something that didn’t previously exist and then offered what they could to help make it happen that mattered. For everyone who offered time, expertise and effort - thank you!
The DNA Guide Catalyst Award is intended to acknowledge the brilliant and generous people I've had the pleasure of interacting with this past year. To let 2010 pass without their gift would be a mistake and if by chance DNA Guide is a huge success....these folks can use this list as proof that I owe them a favor.
The winners on this list below appear roughly by chronology …starting with the Personalized Medicine World Conference in January 2010.
DNA Catalyst Awards for 2010
* Melanie Swan – Founder DIYgenomics.org,, for offering her own genetic data to work with.
* David Ewing Duncan for offering us his own genetic data to work with.
* Raymond McCauley, Illumina for lunch and offering his genetic data to work with.
* Rade Drmanac, Complete Genomics for spending a large chunk of his time with us at Personalized Medicine World conference and having us come in to Complete Genomics afterwards.
* Jordanna Joaquina - Founder of Access DNA (now Inheritied Health) and Ash Damle CEO of MEDgle.com for sharing the startups panel at PMWC2010.
* Thomas Li from Hoffman La Roche – for encouraging feedback.
* Roy Varshavsky, Microsoft Israel Innovation Labs for encouragement.
* Sean David from Stanford School of Medicine for suggesting he’d like DNA Guide software in a clinical setting to help get smokers to stop by viewing their SNPs.
* Matthew Hudes of Deloitte for consumer survey info.
* Lisa Thornquist, for information on the grants.
* Yelena Shevelenko – ITechomics (previously with Rosetta Inpharmatics) for sharing a ride to the airport and expressing interest in working on the project.
* Wolfgang Daum, Boston Heart Lab for the intro to Knome.
* Jorge Conde and Sundar Subramaniam for fitting in a web-ex conference.
* Tom Eddington for kind advice
* Richard Resnick, Genome Quest for reaching out to discuss collaborations.
* Nola E. Masterson and Martin Reese for encouragement.
* Remi Brouard, for tremendous endurance at BayBio round table and offering a referral to Eric Topol.
* C. Rachal Winger, K&L Gates for some fun phone calls.
* Cong-Qiu Chu, MD, PhD for wanting our software for his clinical practice.
* Nathan Lillegard of Flora Genex for suggesting DNA Guide might be helpful for plant genomes.
* Lewis Rumpler of Signature Genomics for seeing DNA Guide's potential.
* Alisha Holloway from J. David Gladstone Institutes for invitation for to give a tutorial at International Conference on Computational Systems Bioinformatics - Stanford 2010.
* Marcie Newman and Timothy Rezendes of British Consultate for lining up meetings for Bill Kimmerly in the UK.
* Ted Driscol for a pleasant meeting.
* Claire KinLaw of Northern Silicon Valley Partnership for the chance to present to Michael Brahan of Kaiser Permanente Ventures.
* Sonia Sousa of Spectro Scape for an offer of intro’s to other investors.
* Arno Boer for intro to Mark Jacobsen which led to meeting with Tim O'Reilly.
* John Boyce for offering DNA Guide a slot on the technology breakthrough panel at the Consumer Genetics Conference in Boston.
* Christopher Tsai, GenHealth for running our technology by Krishna Yeshwant at Google Ventures.
* Jeff Protentis – for the intro to Mark Boguski and coming on board as our sales rep @ 100% commission
* Paul Slowey of Oasis Diagnostics for reaching out.
* Maren Connary and Sean Chai for a great tour of Kaiser’s Innovation Facility during Health Camp.
* Mandy Gamarra and Jackie Kleinman of WISE for a fun night of pico punch.
* Rajesh Desai for some helpful walks.
* Nancy Mize for a way into Astia which opened other doors.
* Bernard Slede of HP - for putting a lot of effort into understanding what we’re doing.
* Peter Tonellato of Laboratory of Personalized Medicine, Harvard for invite to Clinical Genomics Intern Symposium
* Mark Boguski, Harvard – for letting me come speak at Harvard Med and being an advisor.
* Lauren Briere, Beth Israel Deaconess Medical Center, for valuable input on feature specs for genetic counselors and pathologists.
* Jamie Heywood, Patients Like Me for picking up the phone during our meeting and trying to reach Jason Bobe .
* Deborah Kessler – for her willingness to serve as CEO.
* Dan’l Lewin, Microsoft – for a good handoff
* George Morrison, Microsoft – for an encouraging phone call
* Jim Karkanias at Microsoft – for a meeting that made all the hard work seem worthwhile.
* Peter Southwood at Autodesk for software help.
* Lee Zhi, for encouragement to present at World DNA Day at Dalian, China.
Also these Twitter users for their "follows" and tweets:
@knome @SOLiDSequencing @TGEN @iontorrent @nanopore @sagebio @lindaavey @QB3 @23andme @dnanexus @GenomeScience @dgmaccarthur @genomicslawyer @westr @bachinksy @Eurogene @labbase @DivaBiotech @ExistenceG, @jensmccabe @DIYgenomics @EdwardWinstead, @duncande @jwoodman @gfry @GenomeScience @BrandonColby_MD @SigneBioPharma @kshameer @genomeweb_news @InheritedHealth @Sociallifeofdna @ResoundinHealth, @BayBIFX @signebiopharma @pgx_reporter @xgencongress @xgenseq @founderspace @gencounsenews @paulblaser @priscillaoppy @jdudley @biotechbythebay @debbiekennett @LaBlogga .
and a few more:
* Matthew Bolt, Indu Subaiya and Lizzie Dunklee for selecting DNA Guide to be a part of Health 2.0 Launch panel Fall 09.
* Jim Plante of Pathway Genomics for a great exchange at Health 2.0 SF.
* To Kevin Kelly and Gary Issac Wolf for the chance to present to the Quantified Self San Francisco meetup.
* Bill Davenhall of ESRI for putting me touch with SJ Camarata
* Richard Ciccarelli for his contribution of art.
For those others who reached out that I didn't get a chance to connect with ... let's try for next year!
My sincere thanks!
Alice Rathjen, Founder DNA Guide, Inc.
Friday, May 28, 2010
Gold Standard for Access to Personal Genetic Information
The document, titled the "DNA Credo", was written by ethicist Ronald M. Green, Ph.d. in the summer of 2000 as part of a direct to consumer genetic testing business plan. Dr. Green was Director, Office of Genome Ethics at NIH 1996-1997 and has written extensively on genetics over the years. The credo below is on file at the USTPO as part of supporting documentation for US Patent: 7089498 of which he is a co-inventor.
"DNA Credo" by Ronald M. Green, Ph.D. (July, 2000)
I. We are committed to the principle that you own your DNA. Each individual has the sole right of access to his or her DNA information as well as the sole right to control access to it by others. This means that no other parties—not government, not insurers, not employers, and not other family members—have a right of access to this information. The only exception to this rule is that, when ethically appropriate, parents of minor children may access the results of DNA analysis and testing done for their child.
II. We are committed to providing ethically appropriate DNA analysis and testing to individuals who provide their DNA to us. However, we also believe that we have a right to determine which services we will offer. We will not perform tests that are of doubtful validity or that clearly produce more harm than good for the individual tested or for society.
III. We are committed to developing and maintaining the most secure and reliable technical means of information access. These technical means are designed to prevent anyone, including the personnel of Dominga LLC, from linking the results of genetic analysis or testing to any subscriber to our services.
IV. We are committed to providing the most up-to-date information on programs of genetic analysis, testing, and screening.
V. We are committed to maintaining transparency and integrity in our conduct. We will inform our subscribers, employees, investors, communities, and other stakeholders of the decisions we make that affect them. We will continuously review the ethical implications of our choices and policies and strive to ensure that they protect the interests and rights of all our stakeholders.
..end of credo.
I hope the regulation of personal genetic data requires terms of service and informed consent forms that clearly state information relevant to the consumer's core interests such as:
1. Whether the consumer can have their raw genetic information removed from the database upon their request.
2. Whether the consumer has exclusive control over who has access to their data.
3. Whether the consumer can download their raw genotype data and exercise management of that information in the marketplace as they determine to be in their self interest.
4. Whether the entity offering services agrees to having third parties audit their system to prove only authorized use has taken place.
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