GEOG3025

Confidentiality and social implications

GEOG3025

Confidentiality and social implications

• Lecture overview:Objectives of lecture

Introductory questions

Confidentiality principles in census and administrative data

Social implications of personal and geographical data

Lecture summary

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Objectives• To understand legislative framework

for gathering official statistics• To understand basic data protection

legislation and principles• To consider the social implications of

statistical population data collection

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Introductory questions…

Who will have access to the data I provide?

Doesn’t the government know all about me already?

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Legislation• Compulsory registration of births

and deaths under Population (statistics) Act 1938 and 1960 allows some statistical data collection

• Census conducted under Census Act (1920)

• Compare Netherlands (e.g.) Official Statistics Act (1996) right to use personal data from government institutions for statistical purposes

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Census Act 1920

• Does not require a census to be taken, but provides the legal framework

• Relates to arrangements involving enumeration and forms – not to administrative population registers

• “…from time to time to collect and publish any available statistical information…”

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Census confidentiality act

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Disclosure protection measures

• Small cell adjustment (rounding to 3s)• Record swapping• Thresholds (40/100 in CAS and

400/1000 in STs)

• Design of tables – design for average cell count greater than one

• Conditions of use/end user licensing

?

Photo: Dave Martin

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Income question in 2001• “Despite strong support… we have

concluded that the inclusion of an income question would mean that the risk to the overall response to the Census was unacceptably high …Recognising the strength of support for this topic we intend to pursue further the availability of DSS benefit data for small areas and other ways of producing estimates of income by area”.Scottish Deputy First Minister Jim Wallace

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Citizen information project

• Consideration of a high quality single population register

• Benefits to citizen (convenience, accuracy of information

• Synergy with identity cards but separate (register streamlines creation)

• New legislation required

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Data Protection Act

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Data protection principles (1) 

1. Personal data shall be processed fairly and lawfully and, in particular, shall not be processed unless- [specific conditions met, inc. consent]

2. Personal data shall be obtained only for one or more specified and lawful purposes, and shall not be further processed in any manner incompatible with that purpose or those purposes.

3. Personal data shall be adequate, relevant and not excessive in relation to the purpose or purposes for which they are processed.

4. Personal data shall be accurate and, where necessary, kept up to date.  

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Data protection principles (2) 

5. Personal data processed for any purpose or purposes shall not be kept for longer than is necessary …

6. Personal data shall be processed in accordance with the rights of data subjects under this Act.

7. Appropriate technical and organisational measures shall be taken against unauthorised or unlawful processing of personal data and against accidental loss or destruction of, or damage to, personal data.

8. Personal data shall not be transferred to a country or territory outside the European Economic Area unless [it provides equivalent protection] 

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Caldicott Report (1997)

• Information explosion creating new risks

• Tension between confidentiality and service provision/research

• Difficulty of obtaining patient consent

• Patient-identifiable information only to be transferred for justified purposes

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Confidentiality rules covering

• Named data or data items which could, either alone or in combination, potentially identify patients (eg. postcode and date of birth)

• Some statistics on small populations (eg. by age-group at electoral ward level where the population at risk is lower than 1,000)

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Caldicott principles

• Justify the purpose• Don’t use patient-identifiable

information unless absolutely necessary• Use the minimum necessary patient-

identifiable information• Access on a strict need-to-know basis• Everyone aware of their responsibilities• Understand and comply with the law

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In practice

• Consent not required where information has been effectively anonymised

• “The tension between individual rights and public good in this area is complex”

• Need for matching and linking, if not identification – new NHS number

• Need to work out limits of implied consent

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Social implications…

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GIS, spatial data and ethics?

• Simple models of ethics fail us in the face of technological and data complexity

• “One solution is for those who create and use the systems to attend more carefully to the other communities to which they belong” (Curry, 1998)

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Moving beyond “PalaeoGIS” (Curry)

• More complete representation (the homeless, narrative time, etc.)

• More accurate representation• Accessibility (by more groups)• Power (regained independence)• Privacy (diminish proiliferation of

digital individuals)• Creation of community

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Neighbourhood Statistics

• Attempt to deliver small area social data to all– But NB practical accessibility

• Potential for empowerment• Requires social action by informed

users• Creation of community??

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Lecture summary

• Current legislative environment• Limitation to censuses• Complexities of data protection• Pragmatic and ethical issues• A call for the creation of

community?