INFO 4470/ILRLE 4470 Ethical Aspects of Data Collection

and Privacy Protection

John M. Abowd and Lars VilhuberMarch 30, 2011

(c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

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Outline

• Overview of human rights and social science• Brief history of human subjects abuses and

confidentiality breaches• Statutory protections and authorizations• Informed consent• Institutional review boards

3/30/2011

(c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

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Privacy and Public Policy

• The right to privacy• The public demand for information• Balancing these concerns• See the Committee on

National Statistics Executive summary from Private Lives and Public Policies

3/30/2011

(c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

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Unethical Medical and Social Research

• Examples that have received much attention• The Tuskegee Syphilis Study• Eugenics

3/30/2011

(c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

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Breaches of Confidentiality with Statistical Data

• Illegal uses of statistical data• The French Census of 1941• Japanese Internment In WWII

3/30/2011

(c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

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Basic Public Policy

• The Privacy Act• The Confidential Information and Statistical

Efficiency Act• URLs on course web site

3/30/2011

(c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

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Statutes Affecting Census and Census Research Data Centers

• Title 13 (Census Bureau data)• Title 26 (Internal Revenue Service data)• Title 44 (CIPSEA)

3/30/2011

(c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

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Mandatory v. Voluntary Censuses and Surveys

• Mandatory: response compelled by law• Voluntary: respondent may refuse all or items

3/30/2011

(c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

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Informed Consent

• What will be asked/collected?• Current uses• Potential future uses

3/30/2011

(c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

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Institutional Review Boards

• Human subjects• Ethical treatment of subjects• Protection of confidentiality• Secondary data analysis

3/30/2011

(c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

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Privacy on the Internet

• Search logs and purchase histories are notoriously difficult to protect

• Since they cannot be santized, most companies don’t allow unsupervised research use

3/30/2011

(c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

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The 21st Century

• Cell phones, mobile devices• RFID scanners• Geospatial data with time stamps and device

IDs is becoming pervasive• As difficult to protect as search logs

3/30/2011