1. INFO 4470/ILRLE 4470 Ethical Aspects of Data Collection and Privacy Protection John M. Abowd and Lars Vilhuber March 30, 2011

2. 2 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

3. 3 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 PoliciesNational Statistics Executive summary from Private Lives and Public Policies 3/30/2011 (c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

4. 4 Unethical Medical and Social Research Examples that have received much attention The Tuskegee Syphilis StudyTuskegee Syphilis Study Eugenics 3/30/2011 (c) John M. Abowd and Lars Vilhuber 2011, all rights reserved

5. 5 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

6. 6 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

7. 7 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

8. 8 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

9. 9 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

10. 10 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

11. 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 11

12. The 21 st 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 (c) John M. Abowd and Lars Vilhuber 2011, all rights reserved 12