New deals on data – Generating open knowledge based on closed data Konrad U. Förstner ZB MED – Information Center for Life Sciences, Cologne, Germany & TH Köln, Cologne Germany November 5th, 2018, Blockchain for Science Con
Disclaimer I have no to connection to any of the companies that I will be metioned here. I present my perspective as a bioinformatician and open science enthusiast. https://www.flickr.com/photos/redjar/113823307/ – CC-BY by flickr user redjar
Open [data|source|*] should be the default in science. This is simply good scientific practice. https://www.flickr.com/photos/subcircle/500995147 – CC-BY by flickr user subcircle
There are cases where privacy migh be a higher good than openess. Certain data should not be linked to individuals. https://commons.wikimedia.org/wiki/File:Masks_in_Venice.jpg CC-BY by Wikipedia user Rasevic
Having access to the such data of a large popuplation would significantly help research and to extend our medicial knowledge. https://de.wikipedia.org/wiki/Datei:Crowd_at_Knebworth_House_-_Rolling_Stones_1976.jpg CC-BY by Wikimedia Commons Ibirapuera
On the other hand the data can be misused for systematic discrimination due to political, ideological and commercial interests. https://www.flickr.com/photos/[email protected]/2226095398 CC-BY by flickr user viZZZual.com
We have moral dillemma. Protect individual rights or push the scientific progress. https://commons.wikimedia.org/wiki/File:Apothecary%27s_balance_with... CC-BY by Wikimedia Commons user Fæ
Similar dilemmata from other research domains • Financial data of organisations • Energy consumption recording of devices • Location data of vehicles https://commons.wikimedia.org/wiki/File:Apothecary%27s_balance_with... CC-BY by Wikimedia Commons user Fæ
Can we research based on black boxed data that is at least reproducible? https://commons.wikimedia.org/wiki/File:Eiserne_Truhe_Museum_Senftenberg.jpg PD
Or can we at least use the data to generate hypthesis that then can be tested with complementary methods? https://commons.wikimedia.org/wiki/File:Eiserne_Truhe_Museum_Senftenberg.jpg PD
Genomics England • Aims to hold 100,000 full genomes • Data processing in closed data centers • Only results leave the center via an ”airlock” https://de.wikipedia.org/wiki/Datei:Crowd_at_Knebworth_House_-_Rolling_Stones_1976.jpg CC-BY by Wikimedia Commons Ibirapuera
Personal Health Train (PHT) • Data stations – (”FAIRports”) • Trains – Workflows that can work on the data provided to them https://de.wikipedia.org/wiki/Datei:Crowd_at_Knebworth_House_-_Rolling_Stones_1976.jpg CC-BY by Wikimedia Commons Ibirapuera
• Locked system • Trust of the platform required https://de.wikipedia.org/wiki/Datei:Crowd_at_Knebworth_House_-_Rolling_Stones_1976.jpg CC-BY by Wikimedia Commons Ibirapuera
(This slide was modified for online deposition - simply click on the link below; It is a news article that describes how 23andMe and other are selling genomic data to pharma industry.) https://www.businessinsider.de/dna-testing-delete-your-data-23andme-ancestry-2018-7
Promises of blockchain-based, decentralized data marketplaces • owners have control over their data and can stay anonymous • standardisation of data • people can be incentivized to share the data • traceability (especially for pharmaceutical companies interesting) https://www.flickr.com/photos/katerha/4592429363 – CC-BY by flick user katerha
Blockchain-based solutions for healthcare data • Nebula (by George Church) • Longenesis • Luna DNA • phrOS (Personal Health Record Operating System) • EncrypGen https://unsplash.com/@toddquackenbush?photo=IClZBVw5W5A - PD
Implications for data owner/seller might be not clear – education needed. https://www.flickr.com/photos/subcircle/500995147 – CC-BY by flickr user subcircle
Data stored off-chain = outsourcing of one important problem (suggestion like Dropbox metioned – IMO quite a bad idea) https://www.flickr.com/photos/subcircle/500995147 – CC-BY by flickr user subcircle
How to avoid false statements in surveys to become interesting for data consumers? https://www.flickr.com/photos/subcircle/500995147 – CC-BY by flickr user subcircle
What are your questions? konrad.foerstner.org / @konradfoerstner zbmed.de / @ZB_MED th-koeln.de / @th_koeln https://www.flickr.com/photos/nateone/3768979925/ – CC-BY by flick user nateone