Data, Anonymity and Consent. UKAN, September 11 th Sir Mark Walport Chief Scientific Adviser to HM Government

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1 Data, Anonymity and Consent UKAN, September 11 th 2014 Sir Mark Walport Chief Scientific Adviser to HM Government

2 2 Data, Anonymity and Consent UKAN, September 11 th 2014

3 Society doesn t work in the absence of data sharing. Who needs to know about us? Family and friends Civil society Business Government 3 Data, Anonymity and Consent UKAN, September 11 th 2014

4 Data opens up a world of possibilities for entertainment, education and efficiency Finding things out Telling other people things Listening and watching things Navigating the real world Navigating fictional worlds Buying and selling stuff Playing games Storing stuff Recording our lives and those of friends/families Socialising with others Blue-skies research Research for policy 4 Data, Anonymity and Consent UKAN, September 11 th 2014

5 How do they use it? Government Voting Planning Taxes Law enforcement 5 Data, Anonymity and Consent UKAN, September 11 th 2014

6 How do they use it? Business Data on our purchases and habits can enable companies to provide more personalised and tailored services. That data can also be used to target advertising. It retains value when sold on to third parties. 6 Data, Anonymity and Consent UKAN, September 11 th 2014

Internet of Things Objects and wearable devices

7 Internet of Things Objects and wearable devices with internet connections. Significant new utility and vulnerability. Currently running Blackett Review to look at the opportunities and threats. Smart Meters Healthcare Transport 7 Data, Anonymity and Consent UKAN, September 11 th 2014

Health data and public opinion An overwhelming majority of the British public - 85% - want any healthcare professional treating them to have secure electronic access to data from their GP's record.

8 Health data and public opinion An overwhelming majority of the British public - 85% - want any healthcare professional treating them to have secure electronic access to data from their GP's record. But 85% (in a different survey) oppose government selling their health records commercially. Mention of safeguards increases support for data sharing from 33% to 51%. 8 Data, Anonymity and Consent UKAN, September 11 th 2014

9 Collective data sharing can benefit all Open data - Citymapper Crowdsourced data - Streetbump Anonymised crowdsourced data Google Traffic Driverless cars 9 Data, Anonymity and Consent UKAN, September 11 th 2014

What about the potential harms? UK research with 58,000 US volunteers found that algorithms based on Facebook likes, which are often public, can predict personality traits.

10 What about the potential harms? UK research with 58,000 US volunteers found that algorithms based on Facebook likes, which are often public, can predict personality traits. 95% accurate in distinguishing African-American from Caucasian-American and 85% for differentiating Republican from Democrat. Some odd links as well. Curly fries correlated with high intelligence 10 Data, Anonymity and Consent UKAN, September 11 th 2014

11 Data Protection Act principle of caution: reveal no more than necessary One customer s Boris bike use, as released openly by TfL. Possibility of identifying an individual. 11 Data, Anonymity and Consent UKAN, September 11 th 2014

IPSOS-MORI personalisation vs privacy % Great deal / Fair amount To what extent, if at all, do you personally trust the following to use the information they have about you in the right way?

12 IPSOS-MORI personalisation vs privacy % Great deal / Fair amount To what extent, if at all, do you personally trust the following to use the information they have about you in the right way? Global Total Great Britain Base: 16,167 adults across 20 countries (1,000 GB), online, 1-15 October 2013, data is weighted. Source: Ipsos Global Trends Survey 12 Data, Anonymity and Consent UKAN, September 11 th 2014

13 13 Data, Anonymity and Consent UKAN, September 11 th 2014

14 Privacy controls are not binary but fall on spectra Openly identifiable Obfuscation Anonymised to the point of losing valuable content Free on the internet (Everyone) Little legislation Access / Environment Governance, accountability and enforcement Locked in a steellined room (Accredited researcher) Highly legislated 14 Data, Anonymity and Consent UKAN, September 11 th 2014

If everyone in the US did so, it would cost the country more than the GDP of Florida. In 2010 GameStation.

15 Problems with consent do we read and understand the full terms and conditions? In 2008, researchers calculated it would take 76 working days to read all the privacy policies you encounter in a year. If everyone in the US did so, it would cost the country more than the GDP of Florida. In 2010 GameStation.com - a UKbased games retailer - added a clause to their T&Cs, to grant Us a non transferable option to claim, for now and for ever more, your immortal soul. Michael Pacher: St. Augustine and the Devil, A publicity stunt, but revealed 88% of customers in the time period had not read the T&Cs. 15 Data, Anonymity and Consent UKAN, September 11 th 2014

16 Can we blame people? Source: Which, via Bobby Duffy IPSOS-MORI 16 Data, Anonymity and Consent UKAN, September 11 th 2014

Released anonymised film rental data and set a $1m prize, hoping to improve recommendation algorithms.

17 Anonymisation is often less effective than planned Released anonymised search data for research purposes. Journalists were able to pick up clues to name and location, then triangulate with embarrassing search queries. Programme was halted, its initiators sacked. Released anonymised film rental data and set a $1m prize, hoping to improve recommendation algorithms. People s viewing taste beyond usual blockbusters is highly individual. Triangulating with IMDB data, bloggers identified individual users and were able to reveal their full list of rentals, not just those they had rated. 17 Data, Anonymity and Consent UKAN, September 11 th 2014

Retail vs. wholesale sharing of data Harm can be done by not sharing data. Professionals should be allowed to use their judgement, for example to protect vulnerable people.

18 Retail vs. wholesale sharing of data Harm can be done by not sharing data. Professionals should be allowed to use their judgement, for example to protect vulnerable people. The Data Protection Act is rarely the real barrier. We must ensure that future data protection legislation does not prohibit common sense sharing of information. 18 Data, Anonymity and Consent UKAN, September 11 th 2014

Balancing risks Hazard + No exposure = No

risks: the challenge is to balance utility

for all kinds of reasons: there should be

discourage them Hazard x exposure = Risk 19

19 Balancing risks Hazard + No exposure = No Risk Don't give false reassurance about the risks: the challenge is to balance utility and privacy Capable people may reidentify for all kinds of reasons: there should be serious barriers and penalties to discourage them Hazard x exposure = Risk 19 Data, Anonymity and Consent UKAN, September 11 th 2014

even selfdestruct services like Snapchat are not that

The recent EU ruling on the right to be forgotten has

20 What will be the effect on people? It is impossible to completely erase a digital past: even selfdestruct services like Snapchat are not that secure. But some are trying. The recent EU ruling on the right to be forgotten has led to a flood of requests to Google, e.g. to remove links to comments that people now regret. Society may need to agree more of a right to be forgiven. 20 Data, Anonymity and Consent UKAN, September 11 th 2014

Dystopia: end of individuality, disrupted fabric of society, childhood play disrupted, monopoly of the state

21 There are utopian and dystopian futures Utopia: Knowledge to all, educating the world, accountability and sustainability. Dystopia: end of individuality, disrupted fabric of society, childhood play disrupted, monopoly of the state in law enforcement disrupted, loss of trust in service providers. JMW Turner, The Rise of the Carthaginian Empire, Data, Anonymity and Consent UKAN, September 11 th 2014 Presidio Modelo prison, Cuba

22 How do we move forward? Technology Support science and skills to identify and manage risk, without ducking it. Communication Frame the debate honestly and effectively: challenge to balance utility and privacy Governance Proportionate responses to opportunities and threats, including safe havens and penalties for misuse 22 Data, Anonymity and Consent UKAN, September 11 th 2014

23 23 Data, Anonymity and Consent UKAN, September 11 th 2014

CONSENT IN THE TIME OF BIG DATA. Richard Austin February 1, 2017

CONSENT IN THE TIME OF BIG DATA Richard Austin February 1, 2017 1 Agenda 1. Introduction 2. The Big Data Lifecycle 3. Privacy Protection The Existing Landscape 4. The Appropriate Response? 22 1. Introduction