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The Deidentification Dilemma:  A Legislative and Contractual Proposal  Robert Gellman 1  Version 2.4  July 12, 2010      Abstract     Deidentification is one method for protecting priva cy while permitting other uses  of personal information.  However, deidentified dat a is often still capable of being  reidentified.  The main purpose of this article is  to offer a legislative-based  contractual solution for the sharing of deidentifie d personal information while  providing protections for privacy.  The legislative  framework allows a data  discloser and a data recipient to enter into a volu ntary contract that defines  responsibilities and offers remedies to aggrieved i ndividuals.     Introduction       The goal of protecting the privacy interests of in dividuals often conflicts with ever- increasing demands for use of personal data to achi eve potentially beneficial objectives in public  health, law enforcement, national security, anti-te rrorism, fraud prevention, and research in  different fields of study.  Conflicts over privacy  can be reduced, moderated, and balanced in  various ways.       Deidentification – the removal of identifiers from  personal information used or disclosed  for purposes unrelated to the purpose for which the  information was originally obtained – is one  method for protecting privacy while permitting othe r uses of personal information.  However,  deidentification does not always make it impossible  to reidentify individuals.  Reidentification is  the linkage of deidentified personal information wi th an overt identifier belonging or assigned to  any living or dead individual.       It is a premise of this article that statistical,  encryption, or other mathematical approaches  to deidentification that protect privacy will not p rovide solutions that will address every type of  […]

[…] invest now. A survey of the literature on RFID in hospitals verifies this. As early as 2004, Agility Healthcare Solutions made a five year pact with three Virginia hospitals to track mobile hospital equipment. In one of these hospitals (Bon Secour s), it was estimated that a positive return on investment would be obtained […]

!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 […]

Architecting*Global*Ethics*Awareness**in*Transnational*Research*Programs*John%Murray,%SRI%International,%Silicon%Valley%CA%jxm@sri.com+November%2015%Summary:%Traditionally,%the%ethical%principles%that%guide%scientific%studies%involving%people%are%primarily%intended%to%cover%direct%human0centered%research.%However,%in%the%modern%online%world,%cyberHcentric%research%is%inherently%data0centered%in%nature,%and%researchers%frequently%operate%with%limited%awareness%of%the%potential%human%risks%and%effects%of%their%activities.%Indeed,%the%nature%of%their%work%is%such%that%any%organizational%oversight%of%their%research%may%be%absent.%Recently,%a%series%of%updates%to%the%U.S.%policies%and%regulations%governing%Institutional%Review%Boards%have%been%proposed,%which%are%likely%to%have%a%significant%impact%on%the%online%research%community.%However,%since%online%studies%inherently%cross%the%boundaries%of%multiple%jurisdictions,%there%is%now%an%even%greater%need%for%harmonizing%ethics%observance%regulations%and%guidelines%in%a%global%context.%(777777*Recent%developments%in%the%field%of%cybersecurity%studies%have%focused%attention%upon%the%ethics%involved%in%undertaking%such%academic%research.%In%particular,%such%discussions%often%center%upon%the%challenges%of%publishing%articles%that%discuss%cybersecurity%explorations%and%exploits,%which%may%reveal%potential%or%real%system%exposures%or%vulnerabilities.%%While%the%moral%dilemmas%of%revealing%system%vulnerabilities%in%academic%publications%are%indeed%important,%they%generally%come%towards%the%end%of%a%(potentially%lengthy)%research%effort,%well%after%other%damage%may%already%have%be%done.%%In%reality,%the%actual%ethical%challenges%should%have%been%considered%much%earlier%in%the%process,%when%the%research%team%were%designing%their%initial%investigations%and%data%collection%activities.%%The%policies%and%standards%based%on%the%1979%Belmont%Report%[1],%which%are%used%to%guide%scientific%ethics%reviews%across%the%U.S.%and%beyond,%have%limited%practical%relevance%to%modern%human%data%collection%and%analysis%activities%that%involve%highlyHnetworked%information%and%communications%technology%(ICT)%systems.%%%Consider%for%example%the%case%of%Batea%(https://batea.docgraph.com/study/),%which%is%a%web%browser%extension%that%research%volunteers%can%download%and%install,%in%order%to%track%their%use%of%Wikipedia’s%health%related%materials.%%The%tool%watches%what%they%do%within%the%site,%and%one%step%away%from%it%when%they%link%out.%The%idea%is%to%gain%insight%into%the%way%that%people%use%the%health%resources%on%Wikipedia,%in%order%to%help%develop%the%software,%policies,%and%social%infrastructure%necessary%to%support%such%usage%of%Wikipedia%in%the%most%natural%fashion.%%The%problem%is%that%collecting%such%data%could%be%invasive%or%the%resulting%logs%could%be%misused.%The%tool%could%also%potentially%form%a%slippery%slope%into%less%ethically%designed%research%by%others,%or%it%could%introduce%a%hacking%vulnerability%within%the% browser%system.%However,%because%of%the%distributed%and%voluntary%nature%of%the%Wikipedia%community,%it’s%not%clear%how%domainHknowledgeable%ethics%reviewers%should%be%involved,%to%provide%diligent%oversight%of%the%research%activities.%%In%the%broader%field%of%online%studies%in%general,%these%’locusHofHoverview’%impracticalities%are%exacerbated%by%the%pervasive%need%to%undertake%comprehensive,%transnational%experimental%projects,%where%much%of%the%human%data%collection%and%analysis%is%undertaken%remotely%across%varied,%and%often%incompatible,%legal%regimes%and%social%norms.%Yet%such%is%the%case%for%numerous%researchers%nowadays,%who%are%studying%ubiquitous%social%networks%and%global%crowdHsourcing%applications,%as%well%as%online%educational%and%gaming%environments,%cybersecurity%tools,%surveillance%systems,%etc.%%In%consideration%of%these%challenges,%%the%Menlo%Report[2]%was%specifically%developed%to%address%issues%of%online%security,%privacy,%anonymity,%and%other%personal%identifiable%information%(PII)%concerns.%The%report’s%authors%recognized%that%the%broad%cyberHresearch%community%needs%a%more%rational%and%coordinated%strategy%for%managing%ethics%observance,%which%particularly%considers%the%scope%and%needs%of%ICT%research.%Such%a%tailored%approach%should%emphasize%studies%of%human%behavior%and%community%activity%online,%and%apply%across%multiple%jurisdictions%in%interactive%professional%and%social%environments.%This%transition%of%some%of%these%concerns%into%formal%policies%and%regulations%recently%progressed%with%the%publication%of%a%Notice%of%Proposed%Rulemaking%(NPRM)%in%the%U.S.%Federal%Register[3].%This%serves%to%promote%conversation%and%comment%from%parties%affected%by%the%proposed%changes.%The%latest%period%for%public%comments%on%the%NPRM%is%open%until%January%2016.%As%they%currently%stand,%some%of%the%proposed%changes%may%have%significant%implications%for%transHnational%cyberHresearch.%One%key%concern%is%the%extent%that%they%might%exacerbate%the%differences%between%human%subjects%research%requirements%in%the%U.S.%and%elsewhere,%while%at%the%same%time%relaxing%some%of%the%more%stringent%requirements%that%currently%apply%to%the%U.S.%research%community.%%Traditional%ethics%reviewers%try%to%ensure%equitable%distributions%of%burdens%and%benefits%among%the%human%subjects%actually%involved%in%the%study.%However,%online%research%activity%can%also%adversely%affect%innocent%bystanders%and%neutral%nonHparticipants.%Given%the%risks%associated%with%realHtime%dataHintensive%experiments,%such%studies%might%better%be%reviewed%in%terms%of%human0harming%research,%rather%than%human+subjects%research.%%%For%example,%solid%contingency%and%response%plans%are%needed%for%mitigation%of%realized%harms,%especially%for%lowHprobability/highHimpact%events.%These%types%of%safety%monitoring%procedures%are%standard%in%traditional%biomedical%studies,%but%are%rarely%considered%in%ICT%research.%Furthermore,%when%research%involves%surveillance,%profiling,%or%monitoring,%additional%vulnerability%protections%are%needed%to%prevent%the%misuse%of%findings%and%results.%This%is%particularly%the%case%when%novel%mergers%of%partial%data%from%several%public%sources%may%produce%PII%that%is%not%individually%available%from%just%one%of%them.%Other%concerns%arise%from% the%potential%for%abuse%of%data%for%social%discrimination,%especially%by%nonHinvestigators.%%Provisions%are%required%to%ensure%conformance%with%international%regulations%on%transborder%data%flow%that%include%personal%information.%In%this%regard,%the%current%oversight%policies%and%data%handling%processes%for%multiHjurisdictional%ethics%approvals%are%primarily%centered%upon%the%requirements%of%pharmaceutical%drug%trials,%medical%device%tests,%etc.,%rather%than%on%the%research%needs%in%globalHscale%social%science,%humanHmachine%systems,%and%ICT.%%%To%address%this%gap,%an%international%ethics%observance%organization%is%needed,%which%would%coordinate/oversee%regulations%and%guidelines%for%research%in%online%systems%and%other%cyberHenvironments%across%multiple%jurisdictions.%This%could%be%a%consortium%of%nonHprofit%organizations%in%several%domains,%which%would%ensure%smooth%transnational%processing%of%approvals.%It%seems%appropriate%that%such%a%consortium%would%need%to%have%the%backing%of%a%recognized%international%entity%such%as%UNESCO.%The%first%steps%toward%such%harmonization%could%be%merely%a%matter%of%coordinating%and%making%available%the%critical%features%of%each%local%research%context,%or%it%could%extend%to%negotiating%safe%harbors%for%compliance%with%local%research%context.%Thus,%if%a%study%complies%with%certain%key%components,%then%it%is%deemed%to%satisfy%local%research%context%requirements%for%specific%countries.%Another,%further%step%might%be%to%aim%for%legislative%harmonization%on%the%topic%of%research%protection.%%The%bottom%line%is%that%almost%any%form%of%standardized%ethical%framework%would%help%cyberspace%researchers%worldwide%become%more%aware%of%the%challenges%and%know%when%they%have%addressed%some%required%basic%considerations.%This%must%be%better%than%the%current%haphazard%obstacle%course,%which%generally%leaves%everyone%guessing%as%to%what%they%still%need%to%do,%to%work%through%this%ethical%minefield.%References:([1]:%%www.hhs.gov/ohrp/humansubjects/guidance/belmont.html%[2]:%%www.dhs.gov/sites/default/files/publications/CSD0MenloPrinciplesCOMPANION0201201030r731_0.pdf%[3]:%+www.federalregister.gov/articles/2015/09/08/2015021756/federal0policy0for0the0protection0of0human0subjects+000000+Dr.*John*Murray%is%a%Program%Director%in%the%Computer%Science%Laboratory%at%SRI%International.%His%research%interests%encompass%interactive%collaborative%systems,%software%engineering,%cognitive%ergonomics,%and%humanHmachine%systems.%He%has%led%many%innovative%interdisciplinary%systems%research%and%development%projects%both%in%academia%and%in%industry,%and%has%held%technical%leadership%and%executive%management%positions%at%several%international%corporations.%%His%technical%experience%includes%diagnostic%modeling%in%complex%networked%systems,%human%behavior%modeling%in%computer%gaming%studies,%smart%product%design,%and%mobile%wearable%computer%systems.%Dr.%Murray%has%received%advanced%degrees%from%Dublin%Institute%of%Technology%in%Ireland,%Stanford%University,%and%the%U.%of%Michigan,%where%he%was%also%an%adjunct%faculty%member.%He%is%also%a%Visiting%Scientist%in%the%College%of%Science%at%San%Jose%State%University.%%

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 […]