Re: [projectvrm] De identification of data

[John Wunderlich < >]

Hyberboly alert:

Maybe the end state is a personal data store as a wearable device (Johny Mnemonic) with a neural interface, coming full circle to cyber version of pre Internet personal interactions.

(been a long day, getting silly)

JW

On Tuesday, July 15, 2014, Adrian Gropper < "> > wrote:

+ 1 Phil

This is exactly the point I was trying to make earlier. The data can be aggregated either in a personal data store (PDS) or by some data broker. Who will pay for the PDS if most of the value is leaking out to the data brokers under the pretense of de-identification?

I'm not arguing against the free use of data for research and "the commons". I'm simply saying that I want the choice of aggregating my data for my own benefit _before_ I'm asked to donate my body to science. 

Phil's "trust acting for data donors/owners" would collect money from the service providers and/or data brokers and use it to pay for my PDS. My PDS would give me the opportunity to deal anonymously with the service providers that I don't trust and still aggregate my data for sale and for donation. Service providers that wanted me to trust them would be encouraged to put some money into the trust.

Adrian

On Tuesday, July 15, 2014, Phil Wolff < > wrote:

What happens when your data has no economic value unless/until aggregated?

Should you have an agreement with the other aggregatees about how to share the value? Like a labor union bargaining unit?

Perhaps not all contributed data is equally valuable? Maybe the first and last contributors get a premium share of the value for triggering and completing a deal?

Should a trust, acting for data donors/owners/operators, distribute economic value to them?

--
Adrian Gropper MD

-- 
John Wunderlich

Fat fingered from a mobile device
Pleez 4give spelling errurz!