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Research vs Privacy
The new battles in our data
2
Over $7
Trillion In
Health
Spending
Your
Heart Rate.
3
apple.com
sleepcycle.com
Your
Sleep.
5
Your DNA.
23andme.com
Here We Go…
6
Your
Commute.
7
Google Maps
Your
Spending
Habits.
8
Your Workout.
9
strava.com
Actually anonymizing
the data is harder than
it sounds.
10
“There’s a ton of resources on NYC Taxi and Limousine
commission, including a mapping from licence number to
driver name, and a way to look up owners of medallions…
This anonymisation is so poor that anyone could, with less
than two hours work, figure which driver drove every single
trip in this entire dataset. It would even be easy to calculate
drivers' gross income or infer where they live.”
—Vijay Pandurangan, Mitro Founder
Incentives in
Opposition.
13
Large,
Well-Organised,
Open Data Sets 14
Accurate,
Secured,
Transparent,
Minimal
15
“On the one hand, constitutional law protects
the personality rights of people; the protection
against data misuse is enshrined in the Swiss
Federal Constitution. On the other hand, the
constitution also guarantees academic freedom.
Researchers thus have a right to be held back as
little as possible in their work.”
— Christian Schwarzenegger, Vice President University of Zurich
The Essential Tension:
17
The more thoroughly you blind the data,
the more thoroughly you blind the researcher.
The Right To
Be Forgotten
18
19
The
Opportunity To
Be Assimilated
Apple’s ResearchKit
https://www.cbinsights.com/research/apple-healthcare-strategy-apps/
Downloaded The App
(48,104)
Provided Consent &
Passed Quiz (16,585)
Email Address Verified
(14,684)
Opted To Share
Broadly (9,520)
Opted To Share
Narrowly (2,681)
Opted Not To Share
(2,483)
Email Not
Verified
(1,901)
Did Not Enroll
(31,519)
“mPower (a Parkinson’s disease app) saw more than 75% of people participating in the
study choose to donate their data, which has allowed it to open-source the data.”
Informed Consent
Evaluation needs to be made on the part of the subjects and the research designers
• When is it worth taking risks?
• We need broader public education about the downsides of data leaks.
• Data subjects need to understand potential implications. (Informed Consent)
To level the playing field, government also has a role in creating informed legislation
• “an aligning and simplification of legal norms to drive research forward efficiently.”
Potential Remedies
© Kaspian 2015-2016
Thank You!
Leitha Matz
@missginsu
COO/CoFounder : Zuper GmbH
getzuper.com
Apple Is Going After The Healthcare Industry, Starting With Personal Health Data
https://www.cbinsights.com/research/apple-healthcare-strategy-apps/

23andMe’s Pharma Deals Have Been The Plan All Along
https://www.wired.com/story/23andme-glaxosmithkline-pharma-deal/
On The Research For Big Data Uses For Public Good Purposes
https://journals.openedition.org/netcom/2556
The Conflicts Around Data Protection
https://www.news.uzh.ch/en/articles/2018/forschung-datenschutz.html
Stealing an AI algorithm and its underlying data is a “high-school level exercise”
https://qz.com/786219/stealing-an-ai-algorithm-and-its-underlying-data-is-a-high-school-level-exercise/
Machine Learning Models that Remember Too Much
https://arxiv.org/pdf/1709.07886.pdf
Toward Reproducibility: Balancing Privacy and Publication
https://towardsdatascience.com/toward-reproducibility-balancing-privacy-and-publication-77fee2366eee
New York taxi details can be extracted from anonymised data, researchers say
https://www.theguardian.com/technology/2014/jun/27/new-york-taxi-details-anonymised-data-researchers-warn
GDPR Requirements List in Plain English
https://www.varonis.com/blog/gdpr-requirements-list-in-plain-english/

New study to measure impact of sleep tracker data on patient-provider communication
https://www.regenstrief.org/article/new-study-measure-impact-sleep-tracker-data-patient-provider-communication/
References:

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Big Data Berlin 2019 | Data Research vs Data Privacy: The New Battlefield in our Databases | Leitha Matz | COO at Zuper

  • 1. Research vs Privacy The new battles in our data
  • 10. Actually anonymizing the data is harder than it sounds. 10
  • 11.
  • 12. “There’s a ton of resources on NYC Taxi and Limousine commission, including a mapping from licence number to driver name, and a way to look up owners of medallions… This anonymisation is so poor that anyone could, with less than two hours work, figure which driver drove every single trip in this entire dataset. It would even be easy to calculate drivers' gross income or infer where they live.” —Vijay Pandurangan, Mitro Founder
  • 16. “On the one hand, constitutional law protects the personality rights of people; the protection against data misuse is enshrined in the Swiss Federal Constitution. On the other hand, the constitution also guarantees academic freedom. Researchers thus have a right to be held back as little as possible in their work.” — Christian Schwarzenegger, Vice President University of Zurich
  • 17. The Essential Tension: 17 The more thoroughly you blind the data, the more thoroughly you blind the researcher.
  • 18. The Right To Be Forgotten 18
  • 21. https://www.cbinsights.com/research/apple-healthcare-strategy-apps/ Downloaded The App (48,104) Provided Consent & Passed Quiz (16,585) Email Address Verified (14,684) Opted To Share Broadly (9,520) Opted To Share Narrowly (2,681) Opted Not To Share (2,483) Email Not Verified (1,901) Did Not Enroll (31,519) “mPower (a Parkinson’s disease app) saw more than 75% of people participating in the study choose to donate their data, which has allowed it to open-source the data.” Informed Consent
  • 22. Evaluation needs to be made on the part of the subjects and the research designers • When is it worth taking risks? • We need broader public education about the downsides of data leaks. • Data subjects need to understand potential implications. (Informed Consent) To level the playing field, government also has a role in creating informed legislation • “an aligning and simplification of legal norms to drive research forward efficiently.” Potential Remedies
  • 23. © Kaspian 2015-2016 Thank You! Leitha Matz @missginsu COO/CoFounder : Zuper GmbH getzuper.com
  • 24. Apple Is Going After The Healthcare Industry, Starting With Personal Health Data https://www.cbinsights.com/research/apple-healthcare-strategy-apps/ 23andMe’s Pharma Deals Have Been The Plan All Along https://www.wired.com/story/23andme-glaxosmithkline-pharma-deal/ On The Research For Big Data Uses For Public Good Purposes https://journals.openedition.org/netcom/2556 The Conflicts Around Data Protection https://www.news.uzh.ch/en/articles/2018/forschung-datenschutz.html Stealing an AI algorithm and its underlying data is a “high-school level exercise” https://qz.com/786219/stealing-an-ai-algorithm-and-its-underlying-data-is-a-high-school-level-exercise/ Machine Learning Models that Remember Too Much https://arxiv.org/pdf/1709.07886.pdf Toward Reproducibility: Balancing Privacy and Publication https://towardsdatascience.com/toward-reproducibility-balancing-privacy-and-publication-77fee2366eee New York taxi details can be extracted from anonymised data, researchers say https://www.theguardian.com/technology/2014/jun/27/new-york-taxi-details-anonymised-data-researchers-warn GDPR Requirements List in Plain English https://www.varonis.com/blog/gdpr-requirements-list-in-plain-english/ New study to measure impact of sleep tracker data on patient-provider communication https://www.regenstrief.org/article/new-study-measure-impact-sleep-tracker-data-patient-provider-communication/ References: