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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! […]

!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 […]

Privacy: The New Generations Omer Tene* Privacy law in general, and informational privacy in particular, have always been closely linked to techno- logical development. In their seminal 1890 article ‘The Right to Privacy’, Warren and Brandeis lament the ‘[i]nstantaneous photographs and newspaper enterprise [that] have invaded the sacred precincts of private and domestic life; and […]

Emerging Ethics Norms in Social Media Research 1 Katie Shilton College of Information Studies University of Maryland, College Park Defining ethical practices for research using data from digital and social media communities is an ongoing challenge. This paper argues that we should learn from practice: that researchers working with open and online datasets are converging […]

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 […]

Privacy Papers for Policy Makers 2013 The publication of “Privacy P apers for Policy M akers” was supported by AT&T, Microsoft, and GMAC. January 1 st, 2014 We are delighted to provide you with FPF’s fourth annual “Privacy Papers for Policy Makers,” representing cutting -edge research and analytical work on a variety of important privacy […]