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!1!Beyond’IRBs:’Ethical’Guidelines’for’Data’Research”’Omer%Tene%and%Jules%Polonetsky%*%!!The! ethical! framework! applying! to! human! subject! research! in! the! biomedical! and!behavioral! research! fields! dates! back! to! the! Belmont! Report.1!Drafted! in! 1976! and!adopted!by!the!United!States!government!in1991!as!the!Common!Rule,2!the!Belmont!principles! were! geared! towards!a! paradigmatic! controlled! scientific! experiment!with!a! limited! population!of! human! subjects! interacting! directly! with!researchers!and!manifesting!their! informed! consent.! These! days,! researchers! in! academic!institutions! as! well! as! private! sector! businesses! not! subject! to! the! Common! […]

Selected Issues Concerning the Ethical Use of Big Data Health Analytics I. Introduction a. Big Data Generally T he terms Big Data and Big Data analytics originally derive from the terms artificial intelligence, business intelligence , and business analytics ; terms used in the 1950s, 1990s, and 2000s, respectively . 1 Although some argue that […]

[…] 77 above. 95 See Information Commissioner’s Office, A Report on the Surveillance Society (September 2006), available at ,www.ico.gov.uk/upload/ documents/library/data_protection/practical_application/ surveillance_society_full_report_2006.pdf .. 96 Consider the recent attempt in Germany to limit employers’ use of Facebook for screening job applicants. David Jolly, ‘Germany Plans Limits on Facebook Use in Hiring’ (25 August 2010) NY Times, available […]

[…] homelessnes s: Identifying values of interest for design in online communities. In Proceedings of the 6th International Conference on Communities and Technologies (C&T 2013) (pp. 36–45). Munich, Germany: ACM. Lease, M., Hullman, J., Bigham, J., Bernstein, M., Kim, J., Lasecki, W., … Miller, R. (2013). Mechanical Turk is Not Anonymous (SSRN Scholarly Paper No. […]

[…] 1999), p. 191. James Q. Whitman argues that privacy is an aspect of personal dignity within the continental tradition. For a useful discussion on privacy especially in Germany and France, see his “The Two Western Cultures of Privacy: Dignity versus Liberty,” Yale Law Journal , Vol. 113 (April 2004). 11 Avishai Margalit, The Decent […]

BEFORE THE PUBLIC UTILITIES COMMISSION OF THE STATE OF CALIFORNIA Order Instituting Rulemaking to Consider Smart Grid Technologies Pursuant to Federal Legislation and on the Commission’s own Motion to Actively Guide Policy in California’s Development of a Smart Grid System. R.08-12-009 (Filed December 18, 2008) COMMENTS OF THE FUTURE OF PRIVACY FORUM ON THE PROPOSED […]

Trusting Big Data Research Neil Richards * & Woodrow Hartzog ** Abstract Although it might puzzle or even infuriate data scientists, suspicion about big data is understandable. The concept doesn’t seem promising to most people. It seems scary. This is partly because big data research is shrouded in mystery. People are unsure about organizations’ motives […]

POLONETSKY*&*TENE*FINAL.DOCX*(DO*NOT*DELETE)*6/4/15*6:51*PM**333*BEYOND’THE’COMMON’RULE:””””””””’ETHICAL’STRUCTURES’FOR’DATA’RESEARCH’IN’NON4ACADEMIC’SETTINGS’JULES*POLONETSKY,*OMER*TENE,*&*JOSEPH*JEROME**ABSTRACT*…………………………………………………………………………………………………….*333!INTRODUCTION*…………………………………………………………………………………………….*334!I.!BIG*DATA*BENEFITS—AND*RISKS*……………………………………………………………*337!II.!CONTEXTUAL*AND*NONGCONTEXTUAL*DATA*USE*…………………………………..*339!III.!WHAT*SHOULD*BE*COVERED*BY*A*CSRB*………………………………………………..*341!A.!Data&experimentation*………………………………………………………………*341!B.!Non1contextual&data&uses*………………………………………………………..*346!C.!Disparate&impact*………………………………………………………………………*349!IV.!CSRB*STRUCTURE*………………………………………………………………………………….*352!A.!Who&is&covered*…………………………………………………………………………..*352!B.!External&(FTC1approved)&or&Internal&(Organization1led)*…*353!V.!GUIDELINES*FOR*CSRB*ENGAGEMENT*…………………………………………………….*356!A.!Guiding&Substantive&Principles*……………………………………………….*356!1.!Respect*for*persons*…………………………………………………………*357!2.!Beneficence*………………………………………………………………………..*358!3.!Justice*………………………………………………………………………………….*360!4.*Respect*for*law*………………………………………………………………….*361!B.!Promoting&Independence&and&Trust*………………………………………*362!C.&Documentation&and&Accountability*……………………………………….*365!CONCLUSION*…………………………………………………………………………………………………*366!*ABSTRACT*As* scientific* knowledge* advances,* new* data* uses* continuously*emerge* in* a* wide* variety* of* contexts,* from* combating* fraud* in* the*payment* card* industry,*to*reducing* the* time* commuters*spend* on*the* road,*detecting* harmful* drug* interactions,* improving* marketing*mechanisms,* personalizing* the* delivery* of* education* in* K–12*************Jules*Polonetsky*is*CoGchair*and*Executive*Director,*Omer*Tene*Senior*Fellow,*and*Joseph* Jerome* Policy* Counsel* at* the* Future* of* Privacy* Forum.* We* would* like* to* thank*Arielle*Brown*for*excellent*assistance*with*research*and*drafting.** POLONETSKY*&*TENE*FINAL.DOCX*(DO*NOT*DELETE)*6/4/15**6:51*PM*334*COLO.&TECH.&L.J.*[Vol.*13*schools,*encouraging*exercise*and*weight*loss,*and*much*more.1*At* corporations,* notGforGprofits,* […]

Comments to the FCC on Broadband Consumer Privacy Peter Swire Huang Professor of Law and Ethics Georgia Tech Scheller College of Business April 28, 2015 This document responds to the request from the Federal Communications Commission to participate in the April 28, 2015 Public Workshop on Broadband Consumer Privacy. I have been asked to speak […]

[…] empirical inquiry — including interviews with, and questionnaires completed by, corporate privacy officers, regulators, and other actors within the privacy field in three European countries, Franc e, Germany and Spain — to identify the ways in which privacy protection is implemented in different jurisdictions, and the combination of social, market, and regulatory forces that […]