NYT Opinion article on selling health data mentions some blockchain startups
The article is a part of a broader series by the New York Times on privacy. It takes a critical look at the movement to treat your data as "your property." Much of this discussion centers around Humanity
, a startup championing a 31st human right which would assert that your data is your property. I was unimpressed by their description of blockchains, they conflate using a blockchain to manage access to data with literally storing data on-chain.
The NYT points out the sensitivity around our health data and how property rights are often curtailed in the public's interest (e.g. we don't let people sell their kidneys.) They point out some problems with the metaphor of data as property and end with a look at a state level legislative initiative by Humanity, but without discussing what the proper way of treating health data is.
Directionally I think the idea of "data as property" is correct. Our data is being used without our consent or knowledge on a mass scale, and I am also working towards ending that practice. But, as a metaphor I think data as property is critically flawed.
Property is alienable, your data is not. If you sold your property to someone else it can be disassociated from you entirely. Your data, particularly your health data, never can be disassociated from you. It will always be about you and tied to you, even when "deidentified
." When you share your data to another party you're not only sharing 0s and 1s. You're sharing a digital representation of yourself. People don't "own" themselves as property, and their data isn't their "property" either.
That's not to say that I don't think people should ever be compensated for their health data per se, in fact the opposite is true. But we need a metaphor that offers a more compelling framework for thinking about data. There are many candidates: commodity, biospecimen, blood, oil, etc but I am most sympathetic towards the idea of thinking of data as labor. As with labor health data can be exploited and with this way of thinking we can naturally leverage a number of useful frameworks, like human rights and collective bargaining, to protect individuals from harms arising from power differentials.
A coauthor and I have a draft of a paper exploring this metaphor here
, and I'd encourage my readers to send me feedback if you read it. From FedTech Magazine: The FDA wants to Use Blockchain to Keep Food Safe
FedTech pulled together a number of quotes from Frank Yiannis, the FDA’s deputy commissioner for food policy and response, and a former exec at Walmart who was involved in Foodtrust. These are all old quotes, and likely stories I've shared here, but it's nice to read them in one place. A blockchain-based distributed public database for electron tomography
Someone tweeted this really cool paper at me. You can have a look at the live system here
.MediLedger's product verification solution goes live
The MediLedger project has been working on a solution for complying with the upcoming first milestone in the Drug Supply Chain Security Act ("DSCSA"). Their launch comes in advance of the November 2019 regulatory deadline, and is an important event as our industry adds another working product to its arsenal. You can read about that product in more depth here
. Their next products will be around streamlining chargebacks and complying with the next DSCSA deadline.I'll be on a ConsenSys webinar talking about blockchain in healthcare on Thursday
Tune in on July 11th from 12 - 1pm ET!