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.   


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.


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