On 17 September 2019 at 08:37:37, Guy Jarvis ( "> ) wrote:
Yes that is a most important distinction Adrian as it shifts the emphasis, as you say, from the futility or at least unsatisfactory emphasis on ownership and focuses attention on the what, where and by whom are survelling each one of us.Accepting that there is a relationship (whether we want it or not) and managing that.
Guy
On Mon, 16 Sep 2019, 21:01 Adrian Gropper, < "> > wrote:I much prefer "data about me" over "MyData" or "our data". It avoids the sense of ownership and it broadens the scope to include data that is under the control of others. The question then becomes: How many copies of the same data about me should there be? We live in a world of cheap computing, coercive consent, and lax transparency that combine to encourage a near infinite duplication of the data about me. Unless we can drive up that cost through tech and regulation, there's no reason for it to change.Adrian
On Mon, Sep 16, 2019 at 2:40 PM Shannon Clark < " target="_blank" rel="noreferrer"> > wrote:That’s an important point but it also elides a deeper and non-trivial question which is often skipped over.What is “our data”? How do you define it? This seems simple perhaps but as you peel away at it it is really far from trivial - many things commonly cited as “private data” are inherently enmeshed in a larger system - only “valid” by their being know to another party. (Is social security numbers in the US for example are only valid in the sense of actually being my specifically assigned number by reference to a lot of other systems) likewise for credit card numbers, phone numbers etc.DNA “data” is even more complex. Does a twin have some rights to the data of their twin? (In the case of identical twins where the DNA at least before any natural mutations starts off identical)? What about parents or siblings who share parts of their dna with someone? How DNA is analyzed and broken down also depends on data sets and computations based on an accumulation of data. Where do you map out the lines of where one person’s data starts and ends?Broadly how do you define data about other parties interacting with you? Ie cell phone carriers negotiating between themselves to route the packets from and to your specific phone? Or the trail of transactional records that might be left behind as you request a webpage which is then routed to your specific browser? Or how mail is forwarded from a sender to the servers that handle your mail. (Claiming that as the recipient of an email you have some rights to the data a sender has about sending that message seems deeply troubling and open to abuse.Defining what is data let alone what is “our” data seems incredibly complex and often non-initiative. And much of the “data” that includes us isn’t about us directly it is incidental. Our phone constantly pinging cell towers as we move across the city. Our car and ourselves being captured by thousands of cameras recording intersections, ATMs, businesses, homes etc. Sensors possibly capturing data from our actions - motion sensors that turn on the lights in a public bathroom, dispense soap or paper towels or automatically flush a toilet. All could be capturing that “data” - is that “our data?” It isn’t easy to answer that. How long I’m in a bathroom feels personal - yet it likely isn’t captured for anything to do with me - more likely it is to track usage, schedule cleanings, manage power use etc.A friend has a smart power company - one of his devices among other features can actually detect quite accurately the specific make and model of the appliances in your home just by analyzing power usage fluctuations very carefully. I think his tools can even detect things like when appliances are run, when an ice maker turns on to make ice or a computer needs charging etc. Audio assistants are often built to always be listening to activate themselves when asked - meaning they likely are capturing a huge range of “data” within the environments they are - conversations but likely also all other noises in the space - water running, toilets flushing, sirens blaring in the distance, music playing, tv shows being watched and likely more.Shannon--
On Mon, Sep 16, 2019 at 11:05 AM Adrian Gropper < " target="_blank" rel="noreferrer"> > wrote:Shannon's comment points to the need for expert interpretation of specific practices. Who will be the learned intermediaries that advise individuals on the best way to use their data. When facing complex and specialized challenges such as serious illness or legal action, we depend on licensed and substitutable doctors and lawyers that work only for us for advice and representation. Who will be our "learned intermediaries" for data use authorization?Adrian
On Mon, Sep 16, 2019 at 1:53 PM Shannon Clark < " target="_blank" rel="noreferrer"> > wrote:Leaving aside the ties between Ancestry.com (or .cc.uk) and the Mormon Church (they acquired FamilySearch which was owned by the Mormon Church directly, founders are Mormons etc) which raises some issues for many there is a bigger reason to be cautious when using any family search / DNA company as a model example.See--Basically many of the DNA companies sell access to their database of DNA to various companies. Some attempt to anonymize their data (how successfully is an unclear question) but others have given access to their databases to law enforcement to find familial matches to DNA (which has been used in multiple criminal cases especially “cold cases”. Likely this has also been used by intelligence agencies but that’s speculative as far as I know.The point is that even companies that customers pay directly may accumulate extremely private data (your DNA is about as private as data gets) and many use it in ways they didn’t disclose or hide behind “opt-in” agreements. (Ancestry for example claims 80% of customers opt in to their dna data being used for research purposes)To be clear I think direct payments from customers is a great business model with lots of positives but it doesn’t cure companies of trying to monetize the data they build up as a course of doing their business - ie of selling their customers even their paying customers to other parties as well.Shannon
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Adrian Gropper MD
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HELP us fight for the right to control personal health data.
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Adrian Gropper MD
PROTECT YOUR FUTURE - RESTORE Health Privacy!
HELP us fight for the right to control personal health data.
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