This presentation was given at the Med-e-tel 2005 Conference in Luxembourg on April 8th, 2005.Ethical Issues in eHealth:  This presentation provides an analysis of privacy for telemedicine based on
common international privacy practices and a recently published privacy
framework for information systems development. Some practical privacy
guidelines are ultimately provided for telemedicine developers.ISOL Research Centre, Waterford Institute of Technology, Waterford, Irelan

Carew, P.

Stapleton, Larry

Stapleton, L.

PRISM: University of Calgary Digital Repository

1Privacy Guidelines for Telemedicine DevelopersPeter J. Carew & Larry StapletonISOL Research Centre, Waterford Institute of Technology, Ireland.Med-e-Tel 2005, Luxemburg2ContentsOverview of international privacy policies, practices and standards.The ethical position of privacy in the information society.Privacy framework for information systems development. [1]Privacy analysis of healthcare informatics. [2]12 guidelines for telemedicine developers.3Privacy MilestonesMilestones that have influenced privacy policy, thinking and legislation internationally:1948: UN Universal Declaration of Human Rights1970: Hesse, Germany. First data protection law in world.1973: US Dept of Health, Education and Welfare Code of Fair Information Practices1980: OECD Guidelines on the Protection of Privacy and Transborder Flows of Personal Data1981: Council of Europe Convention for the Protection of Individuals with regard to Automatic Processing of Personal Data1995: EU Data Protection Directive 95/46/EC1998/1999/2000: FTC Privacy Reports to Congress2000: Charter of Fundamental Rights of the European Union2001: USA Patriot Act.  Draconian anti-privacy legislation.The list is not exhaustive, and focuses largely on EU and US privacy developments.  Many other countries have also passed national privacy legislation. [3]4International Privacy PracticeHuman Rights Charters. [4, 12, 13, 14, 15]Fair Information Practices (FIPs). [5, 6, 16, 17](1) Notice (2) Choice (3) Access (4) SecurityCouncil of Europe Convention. [3, 18]OECD Guidelines. [5, 7, 19](1) Collection limitation (2) Data quality (3) Purpose specification (4) Use limitation (5) Security safeguards (6) Openness (7) Individual participation (8) Accountability. EU Directive. [3, 8, 9, 20]Legislation vs. Self-Regulation. [3, 9, 10]International Privacy Standards. [8, 11, 21]5Privacy and EthicsBroadly, the ethical arguments for and against privacy can be summed up as:There are arguments for both sides!Which ethical position is stronger remains an open question.For Privacy Against PrivacyPrivacy Perspective Human Rights CommunitarianNormative Ethics Category DeontologicalUtilitarian / Consequentialist6Privacy Guidelines for TelemedicineThere are many generic privacy guidelines and perspectives.The guidelines presented here are based on an amalgamation of:A recent ISD privacy framework. [1]A recent privacy analysis of healthcare informatics. [2]OECD Guidelines. 7Privacy Framework [1]                           Global   Global factors contributing to privacy  (e.g. society, culture)   Physical  Environment (e.g. office, home, hospital, etc.) where an individual may desire physical solitude.   Social  The freedom individuals have to withdraw from, or enter into, interactions with others.    Informational  Ability to control personal information.    Psychological (Individual)  Individual psyche. (related to Social).   Privacy Dimension/Id Factor Class Physical        P1 Environment  T      P2 Territoriality (Property)  T      P3 Territoriality (Body)   T      P4 Solitude (Physical)  T      P5 Repose   T      P6 Physical Access   C      P7 Sensory and Comms Channels C      P8 Violator (Relationship) C Social        S1 Intimacy (External)  T      S2 Intimacy (Internal)  T      S3 Territoriality (Status)   T      S4 Solitude (Social)  T      S5 Anonymity   T      S6 Autonomy T      S7 Interactions and Comms  C      S8 Units  C      S9 Formality   C      S10 Personalness of Topic   C Psychological (Functions)         Y1 Self-Identity F      Y2 Personal Growth F      Y3 Autonomy F      Y4 Contemplation F      Y5 Self-Protection F      Y6 Confiding F      Y7 Emotional Release F      Y8 Rejuvenation F      Y9 Creativity F Informational        I1 Territoriality (Knowledge)   T      I2 Reserve   T      I3 Release of Personal Info C      I4 Distribution of Personal Info C      I5 Use of Personal Info   C Global        G1 Control C      G2 Personal Chars and Circumstance C      G3 Organisational C      G4 Cultural C      G5 Societal C  8Privacy Analysis of Healthcare InformaticsThe main findings of the analysis for patients and healthcare workers (the 2 main privacy stakeholders) identified in [2] are:Patients Healthcare WorkersMajor Privacy ThemesSafetyEmpowermentConfidingThird Party Data UseTerritorialitySentience & EmbodimentSocial IssuesAutonomy9Analysis MethodOECD Guidelines on Y axis. Privacy framework dimensions on X axis.Individual guidelines are considered for each dimension.Dimension factors identified as relevant.Privacy themes are also included as appropriate.A set of generic guidelines are established to mitigate privacy risks.10Analysis ResultsPhysical Social Psychological Informational Global GuidelineCollection Limitation and ConsentP7 S5 Y3, Y4, EmpowermentI3 G1, G2, G3123Data Quality Disembodiment,SafetyS7, S10,Social Issues (Empathy)Y6, Confiding I1, I2, I3 - 4Purpose SpecificationP5 S3 Y3, Y5, EmpowermentI1, I4, I5 G1 52Use Limitation P2, P3 S1, S2, S5 Y7 I5, Third Party UseG3 6Security SafeguardsSafety S5, S6 Y5 I4 G3 78Openness P8 S2, S7 Y1 I1, I4, I5 G3 9 Individual ParticipationP1, P2, P3, P7 S3, S7, S6, EmpowermentY3, EmpowermentI1, I2, I3, I4, I5, Empowerment (Access & Control of Data)G2, G4 621011Accountability P1, Disembodiment (Risk)S3, S9 Y3, Y5 I4, I5 G5 71211Guidelines1. Limit Collection. Only collect what is relevant and required.  Unethical to gather superfluous data without careful analysis.2. Consent Management Facility. Allow patients to change consent associated with individual data stored on them via some convenient interface (e.g. Web based).  All consents should be “opt out” by default, as patients should explicitly authorise specific uses.  Consent should be revocable at any time.  Beware of coercion vs. consent.3. Patient Information and Training Facility. Develop easily accessible tutorials, etc. so patients understand how data is collected (sensors), types of data collected (e.g. video, vital signs) and how it is used (e.g. in treatment, third party).  Necessary for informed consent.4. Improved Sensors to Improve Realism in Telemedicine.Disembodiment in telemedicine applications can be somewhat addressed in this way.5. Purpose Specification. Specify purpose of all data collected at collection time (e.g. any third party use).6. Use Limitation. No use beyond that specified and consented to (e.g. third party access, data mining).  Data destroyed after use where possible.12…continued7. Security Principle. Data stored should be kept secure from unauthorised access. Access on “need to know” basis only.8. Anonymity. Patient anonymity should be supported as desired (e.g. verification vs. identification).  Patient’s identifying information could be stored separate from the medical data.9. Support Patient Data Access. Patients should be able to easily access their data and see what uses it is being put to.  Transparency.10. Control Principle. Patients should remain in control of their own data and treatment wherever possible.11. Individuality Principle. Different people have differing attitudes to privacy based on their personality, culture, etc. which must be supported.  12. Professional Responsibility. All involved in telemedicine development must take responsibility for privacy issues.  It is unacceptable for engineers to dismiss privacy as a managerial issue.13ConclusionsThere are a plethora of privacy guidelines and conventions.No dedicated international privacy standard exists.The right to privacy has a predominantly deontological ethics value position.Privacy has many dimensions: physical, social, psychological, informational, global.  All must be considered when developing information systems.Different stakeholders have differing privacy value positions.12 general guidelines for telemedicine developers are provided.14Q&AContacts:Peter Carew   pcarew@wit.ieLarry Stapleton   lstapleton@wit.ie15References[1] Carew, P.J. and L. Stapleton (2004). Towards a privacy framework for information systems development, Proceedings of the 13th international conference on information systems development ISD’2004, Vilnius.[2] Carew, P.J. and L. Stapleton (2005). Privacy, patients and healthcare workers: a critical analysis of large scale, integrated manufacturing information systems reapplied in health, Proceedings of the 16thIFAC World Congress, Prague, forthcoming.[3] Henderson, S.C. and C.A. Snyder (1999). Personal information privacy: implications for MIS managers.Information & Management, 36(4), 213-220. [4] Manny, C.H. (2003). Personal privacy – transatlantic perspectives European and American privacy: commerce, rights and justice – part 1. Computer Law & Security Report, 19(1), 4-10. [5] Gellman, R. (2002). Perspectives on privacy and terrorism: all is not lost - yet. Government Information Quarterly, 19(3), 255-264. [6] Strauss, J. and K.S. Rogerson (2002). Policies for online privacy in the United States and the European Union. Telematics and Informatics, 19(2), 173-192. [7] Ashley, P., C. Powers and M. Schunter (2002). From privacy promises to privacy management: a new approach for enforcing privacy throughout an enterprise, Proceedings of the 2002 workshop on New security paradigms, Virginia Beach, Virginia, 43-50[8] Bennett, C.J. (2000). An international standard for privacy protection: objections to the objections, Proceedings of the tenth conference on computers, freedom and privacy, Toronto, 33-38[9] Muenchinger, N.E. (2001). Information Privacy Regulation: The EU Model and the French Model. Computer Law & Security Report, 17(6), 390-394. [10] Steinke, G. (2002). Data privacy approaches from US and EU perspectives. Telematics and Informatics, 19(2), 193-200. 16…continued[11] Bennett, C.J. (1997). Arguments for the standardization of privacy protection policy: Canadian initiatives and American and international responses. Government Information Quarterly, 14(4), 351-362.[12] 1948: United Nations Universal Declaration of Human Rights (Article 12) [13] 1950: Council of Europe Convention for the Protection of Human Rights and Fundamental Freedoms (Article 8) [14] 1966: International Covenant on Civil and Political Rights (Article 17) (in force 1976) [15] 2000: Charter of Fundamental Rights of the European Union (Article 8) [16] 1973: “Records, Computers, and the Rights of Citizens”, US Dept of Health, Education, and Welfare Report[17] 1998: “Privacy Online: A Report to Congress”, FTC Report to Congress[18] 1981: Council of Europe Convention for the Protection of Individuals with regard to Automatic Processing of Personal Data[19] 1980: OECD Guidelines on the Protection of Privacy and Transborder Flows of Personal Data[20] 1995: EU Data Protection Directive 95/46/EC [21] 1996: Canadian CSA Model Code for the Protection of Personal Information 

Privacy guidelines for telemedicine developers

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