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Protecting Human Health and Security in Digital Europe: How to Deal with the “Privacy Paradox”?

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Abstract

This article is the result of an international research between law and ethics scholars from Universities in France and Switzerland, who have been closely collaborating with technical experts on the design and use of information and communication technologies in the fields of human health and security. The interdisciplinary approach is a unique feature and guarantees important new insights in the social, ethical and legal implications of these technologies for the individual and society as a whole. Its aim is to shed light on the tension between secrecy and transparency in the digital era. A special focus is put from the perspectives of psychology, medical ethics and European law on the contradiction between individuals’ motivations for consented processing of personal data and their fears about unknown disclosure, transferal and sharing of personal data via information and communication technologies (named the “privacy paradox”). Potential benefits and harms for the individual and society resulting from the use of computers, mobile phones, the Internet and social media are being discussed. Furthermore, the authors point out the ethical and legal limitations inherent to the processing of personal data in a democratic society governed by the rule of law. Finally, they seek to demonstrate that the impact of information and communication technology use on the individuals’ well-being, the latter being closely correlated with a high level of fundamental rights protection in Europe, is a promising feature of the socalled “e-democracy” as a new way to collectively attribute meaning to large-scale online actions, motivations and ideas.

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Notes

  1. This right is being promoted by the International Telecommunications Union: http://www.itu.int/en/about/Pages/overview.aspx. Accessed 2 July 2013.

  2. Since the European Commission proposed the first Data Protection Directive in the 1990 s, “[t]he internet has moved out of the university lab into 56 % of European homes and 95 % of OECD businesses”.

  3. For example, in the medical field “[i]nteroperability can be defined as the capability for independent and heterogenous health information systems to exchange health-related data for use by doctors, healthcare providers and patients”.

  4. According to the Oxford Dictionaries, a “paradox” is “a person or thing that combines contradictory features or qualities”: http://oxforddictionaries.com/definition/english/paradox?q=paradox. Accessed 2 July 2013.

  5. For example, medical data being registered on an electronic health insurance card might contribute to better health care performance, as it enables medical doctors, in case of life-threatening emergency, to find out without delay about allergies against drugs of the patient; another example is the registration of personal data of citizens of one country residing in another country with their embassy enabling them to be contacted in case of a major threat to public security.

  6. Citizens especially fear ID fraud and the use of information without knowledge, data sharing with third parties without having consented and, more generally, the use of data for purposes other than those consented for.

  7. To quote only the most frequently invoked instruments: European Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR), Treaty on the European Union, Treaty on the Functioning of the European Union, Charter of Fundamental Rights of the European Union.

  8. The German Federal Constitutional Court established the link between “the storage of telecommunications traffic data without occasion” and its impact on individual well-being by stating that it “is capable of creating a diffusely threatening feeling of being watched which can impair a free exercise of fundamental rights in many areas” at para. 212 of this decision.

  9. Among these specific risks, Art. 33 § 2 lists namely the following: “(a) a systematic and extensive evaluation of personal aspects relating to a natural person or for analysing or predicting in particular the natural person's economic situation, location, health, personal preferences, reliability or behaviour, which is based on automated processing and on which measures are based that produce legal effects concerning the individual or significantly affect the individual; (b) information on sex life, health, race and ethnic origin or for the provision of health care, epidemiological researches, or surveys of mental or infectious diseases, where the data are processed for taking measures or decisions regarding specific individuals on a large scale; (c) monitoring publicly accessible areas, especially when using optic-electronic devices (video surveillance) on a large scale; (d) personal data in large scale filing systems on children, genetic data or biometric data; (e)….”.

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Authors and Affiliations

  1. Institute for Biomedical Ethics (IBMB), Universität Basel, Basel, Switzerland

    Isabell Büschel & Bernice Elger

  2. UMR CNRS 7318 Droits International, Comparé, Européen (DICE), Aix-Marseille University, Aix-en-Provence, France

    Rostane Mehdi

  3. Master 2 Sécurité et Défense, Intélligence Stratégique SE-DEFIS, Sciences Po, Rennes, France

    Anne Cammilleri

  4. Laboratoire de Psychologie Cognitive, CNRS, UMR 7290, Aix-Marseille University, Marseille, France

    Yousri Marzouki

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  1. Isabell Büschel
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  2. Rostane Mehdi
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  3. Anne Cammilleri
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  4. Yousri Marzouki
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  5. Bernice Elger
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Correspondence to Isabell Büschel.

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Büschel, I., Mehdi, R., Cammilleri, A. et al. Protecting Human Health and Security in Digital Europe: How to Deal with the “Privacy Paradox”?. Sci Eng Ethics 20, 639–658 (2014). https://doi.org/10.1007/s11948-013-9511-y

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