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The International Observatory on Vulnerable People In data protection

The Mission of the Observatory

The International Observatory on Vulnerable People in Data Protection (Vulnera) is a research dissemination and networking platform focusing on the multifaceted connotations that the notion of human ‘vulnerability’ may assume in the data protection and privacy domains. Established under the Brussels Privacy Hub and Future of Privacy Forum Europe, the Observatory absolves primarily two functions:

Research and Education

By documenting a wide variety of resources, ranging from academic works to policy documents and judgments, arranged in thematic sections, tackling the vulnerabilities of people in data processing from different points of view (e.g., within the processing or as an outcome of the data processing; depending on gender, age, sexual orientation, the status of migrant, etc.).

Dissemination

By creating a multidisciplinary network of researchers, practitioners, public officials and activists with complementary expertise in order to promote a debate (through events, webinars, conferences, research projects) towards a common and deeper understanding of the factors affecting the vulnerability of individuals and groups in the digital world. Among our goals is to strengthen the involvement of civil society in academic research by facilitating the contacts between researchers and human rights activists and organisations.

Resources

Disclaimer: The resources are arranged per thematic sections to facilitate the consultation. However, we are aware of the intersections and overlaps thereof. We are also aware that pre-identifying categories of vulnerable people in data processing is not possible, vulnerability being a largely contextual and elusive concept. We are not claiming to be exhaustive, but to initiate a discussion.

Do you have any suggestions as to how improve the repository? Have you come across any resource that should be included in the repository? Contact us.

Theories of vulnerability

Academic writings 

Albertson Fineman, M. (2021). Universality, Vulnerability, And Collective Responsibility. Les ateliers de l’éthique. http://dx.doi.org/10.2139/ssrn.3869039  

Asquith, N. L., Bartkowiak-Théron, I., & Roberts, K. A. (2017). Policing encounters with vulnerability. Springer. https://rd.springer.com/book/10.1007/978-3-319-51228-0 

Cole, A. (2017). All of us are vulnerable, but some are more vulnerable than others: The political ambiguity of vulnerability studies, an ambivalent critique. The Politics of Vulnerability, 110-128. https://doi.org/10.4324/9781315180519-8 

Cooper, F.R. (2015). Always Already Suspect: Revising Vulnerability Theory. North Carolina Law Review, 93, 1339-1379. https://ssrn.com/abstract=2605151 

Luna, F. (2009). Elucidating the Concept of Vulnerability: Layers Not Labels. International Journal of Feminist Approaches to Bioethics, 2(1), 121–139. http://www.jstor.org/stable/40339200

Luna, F. (2019). Identifying and evaluating layers of vulnerability – a way forward. Developing World Bioethics, 19, 86 – 95. https://doi.org/10.1111/dewb.12206

Malgieri, G., & Niklas, J. (2020). Vulnerable data subjects. Computer Law and Security Review, 37, 105415. https://ssrn.com/abstract=3569808  

Vulnerable people in data processing

- Women

Academic writings 

Abu-Laban, Y. (2015). Gendering Surveillance Studies: The Empirical and Normative Promise of Feminist Methodology, Surveillance & Society, 13(1), 44-56. https://doi.org/10.24908/ss.v13i1.5163  

Buolamwini, J. and Gebru, T. (2018). Gender Shades. Intersectional Accuracy Disparities in Commercial Gender Classification, Proceedings of the 1st Conference on Fairness, Accountability and Transparency (PMLR), 81, 77-91. https://proceedings.mlr.press/v81/buolamwini18a.html 

Carter, L. (2021). Prescripted living: gender stereotypes and data-based surveillance in the UK welfare state. Internet Policy Review, 10(4). https://doi.org/10.14763/2021.4.1593 

Hampton, L. M. (2021). Black Feminist Musings on Algorithmic Oppression, Proceedings of the 2021 ACM Conference on Fairness, Accountability and Transparency. https://doi.org/10.1145/3442188.3445929

Criado-Perez, C. (2019). Invisible Women: Data Bias in a World Designed for Men. https://carolinecriadoperez.com/book/invisible-women/ 

D’Ignazio, C., & Klein, L. F. (2019). Data Feminism. https://data-feminism.mitpress.mit.edu/ 

Malgieri, G., & Fuster, G.G. (2021). The Vulnerable Data Subject: A Gendered Data Subject? SSRN Electronic Journal. http://dx.doi.org/10.2139/ssrn.3913249 

Jarrett, K. (2016). Feminism, labour and digital media: The digital housewife. New York, NY: Routledge. ISBN 9781315720111

Kadiri, A.P.L. (2021). Data and Afrofuturism: an emancipated subject?. Internet Policy Review, 10(4). https://doi.org/10.14763/2021.4.1597 

Ni Loideain, N. & Adams, R. (2018). From Alexa to Siri and the GDPR: The Gendering of Virtual Personal Assistants and the Role of EU Data Protection Law. King’s College London Dickson Poon School of Law Legal Studies Research Paper Series. http://dx.doi.org/10.2139/ssrn.3281807 

McEwen, K.D. (2018). Self-Tracking Practices and Digital (Re)Productive Labour, Philosophy & Technology 31, 235-251. https://doi.org/10.1007/s13347-017-0282-2 

Peña, P. and Varon, J. (2019). Consent to our Data Bodies. Lessons from feminist theories to enforce data protection. Developed by Coding Rights. Available at: https://codingrights.org/docs/ConsentToOurDataBodies.pdf.

Siapka, A. & Biasin, E. (2021). Bleeding data: the case of fertility and menstruation tracking apps. Internet Policy Review, 10(4). https://doi.org/10.14763/2021.4.1599

Sørum, H., Eg, R., & Presthus, W. (2022). A Gender Perspective on GDPR and Information Privacy. Procedia Computer Science196, 175-182. https://doi.org/10.1016/j.procs.2021.12.003

Theilen, J. T. & Baur, A. & Bieker, F. & Ammicht Quinn, R. & Hansen, M. & González Fuster, G. (2021). Feminist data protection: an introduction. Internet Policy Review, 10(4). https://doi.org/10.14763/2021.4.1609

Weinberg, L. (2017). Rethinking Privacy: A Feminist Approach to Privacy Rights after Snowden. Westminster Papers in Communication and Culture, 12(3), 5-20. https://doi.org/10.16997/wpcc.258

European Court of Human Rights

Avram and Others v. Moldova (Third Section) 41588/05 2011 https://hudoc.echr.coe.int/eng?i=001-105468

Khadija Ismayilova v. Azerbaijan (Fifth Section) 65286/13 and 57270/14) 2019 https://hudoc.echr.coe.int/eng?i=001-188993

Buturuga v. Romania (Fourth Section) 56867/15 2020 Official Language in French: https://hudoc.echr.coe.int/eng?i=001-200842 Unofficial English Translation: In pp. 374-376 https://rm.coe.int/new-caselaw-06-2021/1680a2fc58

Policy documents

UNESCO (2020). Artificial intelligence and gender equality: key findings of UNESCO’s Global Dialogue. https://unesdoc.unesco.org/ark:/48223/pf0000374174 

Amnesty International & Access Now (2018). The Toronto Declaration: Protecting the right to equality and non-discrimination in machine learning systems. https://www.torontodeclaration.org/community/creators/ 

Advisory Committee on equal opportunities for women and men (2020). Opinion on Intersectionality in Gender Equality Laws, Policies and Practices. https://ec.europa.eu/transparency/expert-groups-register/screen/expert-groups/consult?lang=en&groupID=1238 

United Nations General Assembly Resolution (2018). The right to privacy in the digital age, https://www.un.org/en/ga/search/view_doc.asp?symbol=A/RES/73/179 

Global Developments 

World Wide Web Foundation (2018) Artificial Intelligence: open questions about gender inclusion http://webfoundation.org/docs/2018/06/AI-Gender.pdf 

- LGBTQIA+

Academic writings 

Beauchamp, T. (2019). Going Stealth. Transgender Politics and U.S. Surveillance Practices. Durham and London: Duke University Press. https://doi.org/10.2307/j.ctv11cw8g8 

Bivens, R. (2017). The gender binary will not be deprogrammed: Ten years of coding gender on Facebook, New Media & Society 19(6), 880-898. https://doi.org/10.1177/1461444815621527

Cirillo, D., Catuara-Solarz, S., Morey, C. et al. Sex and gender differences and biases in artificial intelligence for biomedicine and healthcare. NPJ Digital Medicine, 3, 81 (2020). https://doi.org/10.1038/s41746-020-0288-5  

Fosch-Villaronga, E., Poulsen, A., Søraa, R. A., & Custers, B. H. M. (2021) A little bird told me your gender: Gender inferences in social media. Information Processing & Management. vol. 58 (3). https://doi.org/10.1016/j.ipm.2021.102541 

Fosch-Villaronga, E., Poulsen, A., Søraa, R. A., & Custers, B. H. M. (2020) Don’t guess my gender, gurl: The inadvertent impact of gender inferences. BIAS 2020: Bias and Fairness in AI Workshop at the European Conference on Machine Learning and Principles and Practice of Knowledge Discovery in Databases (ECML-PKDD), 14-18 September 2020, online. 95038630 Published paper

Hamidi, F., Scheuerman, M. K., & Branham, S. M. (2018, April). Gender recognition or gender reductionism? The social implications of embedded gender recognition systems. In Proceedings of the 2018 chi conference on human factors in computing systems, 1-13. https://doi.org/10.1177/2056305118768299

Keats Citron, D. (2018). Sexual privacy. Yale LJ128, 1870. https://openyls.law.yale.edu/bitstream/handle/20.500.13051/10382/Citron_q8ew5jjf.pdf?sequence=2&isAllowed=y

Keyes, O. (2018). The misgendering machines: Trans/HCI implications of automatic gender recognition. Proceedings of the ACM on Human-Computer Interaction, 2(CSCW), 1-22. https://doi.org/10.1145/3274357 

Light, B., Mitchell, P., & Wikström, P. (2018). Big Data, method and the ethics of location: A case study of a hookup app for men who have sex with men. Social Media+ Society4(2). https://doi.org/10.1177/2056305118768299

MacKee, F. (2016). Social media in gay London: Tinder as an alternative to hook-up apps. Social Media+ Society2(3). https://doi.org/10.1177/2056305116662186

Poulsen, A., Fosch-Villaronga, E., & Søraa, R.A. (2020) Queering Machines. https://doi.org/10.1038/s42256-020-0157-6 

Sriram, N. (2020). Dating Data: LGBT Dating Apps, Data Privacy, and Data Security. U. Ill. JL Tech. & Pol’y, 507. https://illinoisjltp.com/journal/wp-content/uploads/2020/12/Sriram_Final.pdf

Guyan, K. (2022) Queer Data  Using Gender, Sex and Sexuality Data for Action https://www.bloomsbury.com/uk/queer-data-9781350230729/

NGO Reports & Articles

Privacy International (2019). From Oppression to Liberation: Reclaiming the Right to Privacy https://privacyinternational.org/report/2457/report-oppression-liberation-reclaiming-right-privacy 

Internet Lab (2019). Drag queens and Artificial Intelligence: should computers decide what is ‘toxic’ on the internet? https://internetlab.org.br/en/news/drag-queens-and-artificial-intelligence-should-computers-decide-what-is-toxic-on-the-internet/

Privacy International (2019). Communities at risk: How security fails are endangering the LGBTIQ+ community https://privacyinternational.org/news-analysis/2782/communities-risk-how-security-fails-are-endangering-lbgtiq-community

Case Law

European Court of Human Rights

Beizaras and Levickas v. Lithuania (Second Section) 41288/15 2020 https://hudoc.echr.coe.int/eng?i=001-200344

Y.T. v. Bulgaria (Fifth Section) 41701/16 2020 Official Language in French: https://hudoc.echr.coe.int/eng?i=001-203898 Unofficial English Translation: In pp. 379-380 https://rm.coe.int/new-caselaw-06-2021/1680a2fc58

Rana v. Hungary (Fourth Section) 40888/17 2020 https://www.stradalex.com/nl/sl_src_publ_jur_int/document/echr_40888-17

X and Y v. Romania (Fourth Section) 2145/16 and 20607/16 2021 Official Language in French: https://hudoc.echr.coe.int/eng?i=001-207364 Unofficial English Translation: In pp. 391-393 https://rm.coe.int/new-caselaw-06-2021/1680a2fc58

- Children

Academic writings 

Demetzou, K., Böck, L. & and Hanteer, O. (2018) Smart bears don’t talk to strangers: Analysing privacy concerns and technical solutions in smart toys for children. Living in the Internet of Things: Cybersecurity of the IoT – 2018, 2018, pp. 1-7, https://doi.org/10.1049/cp.2018.0005 

Dolan, J. (2022). Fundamentals for a Child-Oriented Approach to Data Processing
European Data Protection Law Review, 8 (1), 7-13 https://doi.org/10.21552/edpl/2022/1/4

Lievens, E.,  van der Hof, S., Liefaard, T., Verdoodt, V.,  Milkaite, I., & Hannema, T. (2019).  ‘Submission to the Committee on the Rights of the Child in View of Their Intention to Draft a General Comment on Children’s Rights in Relation to the Digital Environment. The Child Right to Protection against Economic Exploitation in the Digital World

Grimes, S. M. (2022). The Politics of Children’s Privacy, European Data Protection Law Review, 8 (1), 14-18 https://doi.org/10.21552/edpl/2022/1/5

Macenaite, M. (2017). From universal towards child-specific protection of the right to privacy online: Dilemmas in the EU General Data Protection Regulation. New Media & Society19(5), 765-779 https://doi.org/10.1177/1461444816686327

Milkaite, I., & and Lievens, E. (2020). Child-Friendly Transparency of Data Processing in the EU: From Legal Requirements to Platform Policies. Journal of Children and Media 14 (1), 5-21 .https://doi.org/10.1080/17482798.2019.1701055

Milkaite, I. & Lievens, E. (2018) Towards a Better Protection of Children’s Personal Data Collected by Connected Toys and Devices. (Digital Freedom Fund) https://digitalfreedomfund.org/towards-a-better-protection-of-childrens-personal-data-collected-by-connected-toys-and-devices/ 

Milkaite, I., & Lievens, E. (2010). Children’s Rights to Privacy and Data Protection around the World: Challenges in the Digital Realm. European Journal of Law and Technology 10(1). https://ejlt.org/index.php/ejlt/article/view/674/912 

Milkaite, I., & Lievens, E. (2019). The GDPR child’s age of consent for data processing across the EU – one year later (July 2019) https://biblio.ugent.be/publication/8621651 

Milkaite, I., & Lievens, E. (2019). The internet of toys: playing games with children’s data? In G. Mascheroni & D. Holloway (Eds.), The internet of toys: practices, affordances and the political economy of children’s smart play (pp. 285–305). https://doi.org/10.1007/978-3-030-10898-4_14

Milkaite, I., Verdoodt, V., Martens, H. & Lievens, E. (2017) The General Data Protection Regulation and Children’s Rights: Questions and Answers for Legislators, DPAs, Industry, Education, Stakeholders and Civil Society. Roundtable Report  

Pangrazio, L., & Selwyn, N. (2018). “It’s not like it’s life or death or whatever”: Young people’s understandings of social media data. Social Media+ Society4(3). https://doi.org/10.1177/2056305118787808

Piasecki, S., & Chen, J. (2022). Complying with the GDPR when vulnerable people use smart devices. International Data Privacy Law. https://doi.org/10.1093/idpl/ipac001  

Shade, L. R., & Singh, R. (2016). “Honestly, we’re not spying on kids”: School surveillance of young people’s social media. Social Media+ Society, 2(4). https://doi.org/10.1177/2056305116680005

van der Hof, S., Lievens, E., & Milkaite, I. (2019). The protection of children’s personal data in a data-driven world : a closer look at the GDPR from a children’s rights perspective. In T. Liefaard, S. Rap, & P. Rodrigues (Eds.), Monitoring children’s rights in the Netherlands : 30 years of the UN convention on the rights of the child (pp. 77–123). Leiden University Press.

van der Hof, S., Lievens, E., Milkaite, I., Verdoodt, V., Hannema, T., & Liefaard, T. (2020). The child’s right to protection against economic exploitation in the digital world. INTERNATIONAL JOURNAL OF CHILDRENS RIGHTS, 28(4), 833–859. https://doi.org/10.1163/15718182-28040003 

van der Hof, S., & Ouburg, S. (2022). “We Take Your Word For It” — A Review of Methods of Age Verification and Parental Consent in Digital Services, European Data Protection Law Review 8(1), 61 – 72. https://doi.org/10.21552/edpl/2022/1/10

Data Protection Authorities’ Guidance 

ICO (Information Commissioner’s Office) (September 2020). Children’s code – Age appropriate design: a code of practice for online services https://ico.org.uk/for-organisations/guide-to-data-protection/ico-codes-of-practice/age-appropriate-design-a-code-of-practice-for-online-services/ 

Irish DPC (Data Protection Commission) (December 2021). The Fundamentals for a Child-Oriented Approach to Data Processing. https://www.dataprotection.ie/en/dpc-guidance/fundamentals-child-oriented-approach-data-processing 

Case Law

European Court of Human Rights

Gaskin v. The United Kingdom (Plenary) 10454/83  1989 https://hudoc.echr.coe.int/eng?i=001-57491

McMichael v. The United Kingdom (Chamber) 16424/90 1995 https://hudoc.echr.coe.int/eng?i=001-57923

M.G. v. The United Kingdom (Second Section) 39393/98 2002 https://hudoc.echr.coe.int/eng?i=001-60642

Tsourlakis v. Greece (First Section) 50796/07 2009 Official Language in French: https://hudoc.echr.coe.int/eng?i=001-95044 Unofficial English Translation: In pp. 153-154 https://rm.coe.int/new-caselaw-06-2021/1680a2fc58

Godelli v. Italy (Second Section) 33783/09 2012 https://hudoc.echr.coe.int/eng?i=001-113460

E.S. v. Sweden (First Section) 34209/96 2002 https://hudoc.echr.coe.int/eng?i=001-60564

Bogomovola v. Russia (Third Section) 13812/09 2017 https://hudoc.echr.coe.int/eng?i=001-174420

Omorefe v. Spain (Third Section) 69339/16 2020 Official Language in French: https://hudoc.echr.coe.int/eng?i=001-203179 Unofficial English Translation: In pp. 374-376 https://rm.coe.int/new-caselaw-06-2021/1680a2fc58

Policy documents

Council of Europe, Recommendation CM/Rec(2018)7 of the Committee of Ministers, ‘Guidelines to Respect, protect and fulfil the rights of the child in the digital environment’, https://rm.coe.int/guidelines-to-respect-protect-and-fulfil-the-rights-of-the-child-in- th/16808d881a 

Global Developments 

Witzleb, N., Paterson, M., Wilson-Otto, J., Tolkin-Rosen, G., Marks, M. (2020). Privacy risks and harms for children and other vulnerable groups in the online environment. https://www.oaic.gov.au/__data/assets/pdf_file/0012/11136/Report-Privacy-risks-and-harms-for-children-and-other-vulnerable-groups-online.pdf

INAI (Instituto Nacional de Transparencia, Accesso a la Información y Protección de Datos Personales) (Octubre 2020). Código de buenas prácticas para orientar el tratamiento en línea de datos personales de niñas, niños y adolescentes.  https://home.inai.org.mx/wp-content/documentos/pdpdoctosguias/codigobuenaspracticasnna.pdf 

- Migrants, people on move & and non-EU citizens

Academic writing 

Brouwer, E. (2020). Large-scale databases and interoperability in migration and border policies: The Non-Discriminatory Approach of Data Protection. European Public Law, 26(1), 92. https://doi.org/10.54648/euro2020005 

González Fuster, G., & Gutwirth, S. (2011). When “Digital Borders” Meet “Surveilled Geographical Borders”: Why the Future of EU Border Management is a Problem. In P. Burgess & S. Gutwirth (Eds.), A Threat Against Europe? Security, Migration and Integration (pp. 171–190). VUBPRESS. http://works.bepress.com/serge_gutwirth/56/ 

Hayes, B. (2017). Migration and data protection: Doing no harm in an age of mass displacement, mass surveillance and “big data”, International Review of the Red Cross 99, 179-209. https://doi.org/10.1017/S1816383117000637  

Molnar, P. (2022). Territorial and Digital Borders and Migrant Vulnerability Under a Pandemic Crisis. In: Triandafyllidou, A. (eds) Migration and Pandemics. IMISCOE Research Series. Springer, Cham. https://doi.org/10.1007/978-3-030-81210-2_3 

Molnar, P. (2020). Technological Testing Grounds – Migration Management Experiments and Reflections from the Ground Up. https://edri.org/wp-content/uploads/2020/11/Technological-Testing-Grounds.pdf 

Meier, P. (2011). New Information Technologies and Their Impact on the Humanitarian Sector, International Review of the Red Cross, Vol. 93, No. 884, pp. 1239 – 1263 https://www.icrc.org/fr/doc/resources/international-review/review-884/review-884-all.pdf

Quintel, T. (2018). Connecting Personal Data of Third Country Nationals: Interoperability of EU Databases in the Light of the CJEU’s Case Law on Data Retention. University of Luxembourg Law Working Paper, 2. https://dx.doi.org/10.2139/ssrn.3132506 

Stachowitsch, S., & Sachseder, J. (2019). The gendered and racialized politics of risk analysis. The case of Frontex. Critical Studies on Security, 7(2), 107–123. https://doi.org/10.1080/21624887.2019.1644050 

NGO Reports & articles

Statewatch & PICUM. (2019). Data Protection, Immigration Enforcement and Fundamental Rights: What the EU’s Regulations on Interoperability Mean for People with Irregular Status https://www.statewatch.org/media/documents/analyses/Data-Protection-Immigration-Enforcement-and-Fundamental-Rights-Full-Report-EN.pdf

Naranjo, D., & Molnar, P. (2020) The Privatization of Migration Control. Retrieved from https://www.cigionline.org/articles/privatization-migration-control/ 

Open Rights Group (2020) Immigration, Data And Technology: Needs And Capacities Of The Immigration Sector https://www.openrightsgroup.org/app/uploads/2020/11/Immigration-Data-and-Technology-Needs-and-Capacities-of-the-Immigration-Sector.pdf 

Privacy International (n/a). Protecting migrants at borders and beyond https://privacyinternational.org/protecting-migrants-borders-and-beyond 

Case Law 

Court of Justice of the European Union

YS v. Minister voor Immigratie, Integratie en Asiel, and Minister voor Immigratie, Integratie en Asiel v M and S (Third Section) ECLI:EU:C:2014:2081 2014 https://curia.europa.eu/juris/document/document.jsf?docid=155114&doclang=EN 

National 

Open Rights Group & Anor, R  v. The Secretary of State for the Home Department & Anor Court of Appeal (Civil Division) Appeal No: C1/2019/2726/QBACF Neutral Citation Number: [2021] EWCA Civ 800 2021 https://www.bailii.org/ew/cases/EWCA/Civ/2021/800.html

Policy documents

European Union Agency for Fundamental Rights. (2018). Preventing unlawful profiling today and in the future: a guide. Publications Office of the European Union. https://doi.org/10.2811/801635 

European Union Agency for Fundamental Rights. (2018). Under watchful eyes: biometrics, EU IT systems and fundamental rights. Publications Office of the European Union. https://doi.org/10.2811/29 

ICRC Rules on Personal Data Protection https://shop.icrc.org/icrc-rules-on-personal-data-protection-pdf-en.html

Hennebry, J., H. KC and K. Williams, 2021. Gender and Migration Data: A Guide for Evidence-based, Gender-responsive Migration Governance. International Organization for Migration (IOM).  https://publications.iom.int/books/gender-and-migration-data-guide-evidence-based-gender-responsive-migration-governance 

Global Developments 

Africa Migration Data Network (AMDN) https://gmdac.iom.int/africa-migration-data-network-amdn 

- Minorities

Academic Writings

Marwick, A., Fontaine, C., & Boyd, D. (2017). “Nobody sees it, nobody gets mad”: Social Media, privacy, and personal responsibility among low-SES youth. Social Media+ Society3(2). https://doi.org/10.1177/2056305117710455

NGO Reports & articles

EDRi (2021) Romani rights and biometric mass surveillance. https://edri.org/our-work/roma-rights-and-biometric-mass-surveillance/ 

Case Law

European Court of Human Rights

Sinan Işık v. Turkey (Second Section) 21924/05 2010 https://hudoc.echr.coe.int/eng?i=001-97087 

Policy documents

European Commission Subgroup on Equality Data (2021). Guidance note on the collection and use of equality data based on racial or ethnic origin https://ec.europa.eu/info/sites/default/files/guidance_note_on_the_collection_and_use_of_equality_data_based_on_racial_or_ethnic_origin_final.pdf

 

- Patients

Academic writings 

Brown, C.L. (2012), Health-Care Data Protection and Biometric Authentication Policies: Comparative Culture and Technology Acceptance in China and in the United States. Review of Policy Research, 29, 141-159.  https://doi.org/10.1111/j.1541-1338.2011.00546.x

Courbier, S., Dimond, R., & Bros-Facer, V. (2019). Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection-quantitative survey and recommendations. Orphanet journal of rare diseases14(1), 1-15. https://doi.org/10.1186/s13023-019-1123-4

Tat, E., Bhatt, D. L., & Rabbat, M. G. (2020). Addressing bias: artificial intelligence in cardiovascular medicine. The Lancet Digital Health, 2(12), e635-e636. https://doi.org/10.1016/S2589-7500(20)30249-1

NGO Reports & articles 

EDRi, (2022). E-Evidence regulation: Why it matters for medical confidentiality? https://edri.org/our-work/e-evidence-regulation-why-it-matters-for-medical-confidentiality/

Data Protection Authorities’ Guidance 

European Data Protection Board Guidelines 03/2020 on the processing of data concerning health for the purpose of scientific research in the context of the COVID-19 outbreak https://edpb.europa.eu/sites/default/files/files/file1/edpb_guidelines_202003_healthdatascientificresearchcovid19_en.pdf

European Data Protection Board Guidelines 04/2020 on the use of location data and contact tracing tools in the context of the COVID-19 outbreak https://edpb.europa.eu/sites/default/files/files/file1/edpb_guidelines_20200420_contact_tracing_covid_with_annex_en.pdf

Case Law 

European Court of Human Rights

Z v. Finland Court (Chamber) 22009/93 1997 https://hudoc.echr.coe.int/eng?i=001-58033

M.S. v. Sweden Court (Chamber) 20837/92 1997 https://hudoc.echr.coe.int/eng?i=001-58177

I v. Finland Court (Fourth Section) 20511/03 2008 https://hudoc.echr.coe.int/eng?i=001-87510

K.H. And Others v. Slovakia Court (Fourth Section) 32881/04 2009 https://hudoc.echr.coe.int/eng?i=001-92418

Szuluk v. The United Kingdom Court (Fourth Section) 36936/05 2009 https://hudoc.echr.coe.int/eng?i=001-92767

Y.Y v. Russia (First Section) 20113/07 2008 https://hudoc.echr.coe.int/eng?i=001-89864

Anne-Marie Andersson v. Sweden (Chamber) 72/1996/691/883 1997  https://hudoc.echr.coe.int/eng?i=001-58086

L.L v. France  (Chamber)  19324/02 2006 https://hudoc.echr.coe.int/fre?i=003-1636723-1714833

Mitkus v. Latvia (Third Section) 7259/03 2012 https://hudoc.echr.coe.int/fre?i=001-113648

Avilkina and Others v. Russia (First Section) 1585/09 2013 https://hudoc.echr.coe.int/fre?i=002-7612

Radu v. The Republic of Moldova (Third Section) 50073/07 2014 https://hudoc.echr.coe.int/eng?i=001-142398

Surikov v. Ukraine (Fifth Section) 41788/06 2017 https://hudoc.echr.coe.int/eng?i=001-170462

Dagregorio and Mosconi v. France (Fifth Section) 65714/11 2017 Official Language in French: https://hudoc.echr.coe.int/eng?i=001-175036 Unofficial English Translation: In pp. 289-290

  1. and Marper v. The United Kingdom (Chamber) 30562/04and 30566/04 2008 https://hudoc.echr.coe.int/eng?i=001-90051

L.H v. Latvia (Fourth Section) 52019/07 2014 https://hudoc.echr.coe.int/eng?i=001-142673 

- Persons with disabilities

Academic writings 

Cobigo, V., Czechowski, K., Chalghoumi, H., Gauthier-Beaupre, A., Assal, H., Jutai, J., … & Bah, F. (2020). Protecting the privacy of technology users who have cognitive disabilities: Identifying areas for improvement and targets for change. Journal of Rehabilitation and Assistive Technologies Engineering7, pp. 1-15. https://doi.org/10.1177/2055668320950195

Wang, Y., Price, C.E. (2022). Accessible Privacy. In: Knijnenburg, B.P., Page, X., Wisniewski, P., Lipford, H.R., Proferes, N., Romano, J. (eds) Modern Socio-Technical Perspectives on Privacy. Springer, Cham. https://doi.org/10.1007/978-3-030-82786-1_13

Weber, M. C. (2017). Protection for privacy under the United Nations Convention on the rights of persons with disabilities. Laws6(3).https://doi.org/10.3390/laws6030010

NGO Reports 

EDRi, (2019), Why Privacy is particularly crucial for people with disabilities? https://edri.org/our-work/why-privacy-is-particularly-crucial-for-people-with-disabilities/

Center for Democracy & Technology (2022). Ableism And Disability Discrimination In New Surveillance Technologies: How new surveillance technologies in education, policing, health care, and the workplace disproportionately harm disabled people. https://cdt.org/insights/ableism-and-disability-discrimination-in-new-surveillance-technologies-how-new-surveillance-technologies-in-education-policing-health-care-and-the-workplace-disproportionately-harm-disabled-people/ 

- Elderly people

Academic writings 

Elueze, I., & Quan-Haase, A. (2018). Privacy attitudes and concerns in the digital lives of older adults: Westin’s privacy attitude typology revisited. American Behavioral Scientist62(10), 1372-1391. https://doi.org/10.1177/0002764218787026

Quan‐Haase, A., & Ho, D. (2020). Online privacy concerns and privacy protection strategies among older adults in East York, Canada. Journal of the Association for Information Science and Technology71(9), 1089-1102. https://doi.org/10.1002/asi.24364

Ray, H., Wolf, F., Kuber, R., & Aviv, A. J. (2020). “Warn Them” or “Just Block Them”?: Investigating Privacy Concerns Among Older and Working Age Adults. UMBC Student Collection. https://doi.org/10.2478/popets-2021-0016

Van den Broeck, E., Poels, K., & Walrave, M. (2015). Older and wiser? Facebook use, privacy concern, and privacy protection in the life stages of emerging, young, and middle adulthood. Social Media+ Society1(2) https://doi.org/10.1177/2056305115616149

Zeissig, E. M., Lidynia, C., Vervier, L., Gadeib, A., & Ziefle, M. (2017, July). Online privacy perceptions of older adults. In International Conference on Human Aspects of IT for the Aged Population (pp. 181-200). Springer, Cham. https://doi.org/10.1007/978-3-319-58536-9_16

- Consumers

Academic writings 

Sartor, G. (2020). New Aspects And Challenges In Consumer Protection – Digital Services And Artificial Intelligence, Policy Department for Economic, Scientific and Quality of Life Policies Directorate-General for Internal Policies https://www.europarl.europa.eu/RegData/etudes/STUD/2020/648790/IPOL_STU(2020)648790_EN.pdf

van Ooijen, I., & Vrabec, H. U. (2019). Does the GDPR enhance consumers’ control over personal data? An analysis from a behavioural perspective. Journal of consumer policy42(1), 91-107. https://doi.org/10.1007/s10603-018-9399-7

Wang, E. S. T. (2019). Role of privacy legislations and online business brand image in consumer perceptions of online privacy risk. Journal of theoretical and applied electronic commerce research14(2), 59-69. http://dx.doi.org/10.4067/S0718-18762019000200106   

Liyanaarachchi, G., Deshpande, S., & Weaven, S. (2020). Market-oriented corporate digital responsibility to manage data vulnerability in online banking. International Journal of Bank Marketing https://doi.org/10.1108/IJBM-06-2020-0313

Bright, L. F., Logan, K., & Lim, H. S. (2022). Social Media Fatigue and Privacy: An Exploration of Antecedents to Consumers’ Concerns regarding the Security of Their Personal Information on Social Media Platforms. Journal of Interactive Advertising, 1-16. https://doi.org/10.1080/15252019.2022.2051097

NGO Reports & Articles

BEUC (2021). EU Consumer Protection 2.0. Structural asymmetries in digital consumer markets https://www.beuc.eu/publications/beuc-x-2021-018_eu_consumer_protection.0_0.pdf

BEUC (2021). EU Consumer Protection 2.0. The Regulatory Gap: Consumer protection in the digital economy https://www.beuc.eu/publications/beuc-x-2021-116_the_regulatory_gap-consumer_protection_in_the_digital_economy.pdf

BEUC (2022). EU Consumer Protection 2.0. Protecting fairness and consumer choice in a digital economy https://www.beuc.eu/publications/eu-consumer-protection-20-protecting-fairness-and-consumer-choice-digital-economy/html

Data Protection Authorities’ Guidance

European Data Protection Board  Guidelines 8/2020 on the targeting of social media users https://edpb.europa.eu/system/files/2021-04/edpb_guidelines_082020_on_the_targeting_of_social_media_users_en.pdf

European Data Protection Board Guidelines 2/2019 on the processing of personal data under Article 6(1)(b) GDPR in the context of the provision of online services to data subjects https://edpb.europa.eu/sites/default/files/files/file1/edpb_guidelines-art_6-1-b-adopted_after_public_consultation_en.pdf 

Case Law 

European Court of Human Rights

Breyer v. Germany (Fifth Section) 50001/12 2020 https://hudoc.echr.coe.int/eng?i=001-200442

Court of Justice of the European Union

Maximilian Schrems v. Facebook Ireland Limited (Third Chamber) ECLI:EU:C:2018:37 2018 https://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:62016CJ0498&from=GA

Fashion ID GmbH & Co. KG v. Verbraucherzentrale NRW eV (Second Chamber) ECLI:EU:C:2018:1039 2018 https://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:62017CC0040&from=EN 

Bundesverband der Verbraucherzentralen und Verbraucherverbände — Verbraucherzentrale Bundesverband eV v. Planet49 GmbH (Grand Chamber) ECLI:EU:C:2019:801 2019 https://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:62017CJ0673&from=EN 

- Employees

Academic writings 

Suder, S. (2021). Processing employees’ personal data during the Covid-19 pandemic. European Labour Law Journal12(3), 322-337. https://doi.org/10.1177/2031952520978994

Keane, E. (2018). The GDPR and Employee’s Privacy: Much Ado but Nothing New. King’s Law Journal29(3), 354-363. https://doi.org/10.1080/09615768.2018.1555065

Kullmann, M. (2018). Platform work, algorithmic decision-making, and EU gender equality law. International Journal of Comparative Labour Law and Industrial Relations, 34(1), 1-21https://ssrn.com/abstract=3195728

Tolsdorf, J., Reinhardt, D., & Iacono, L. L. (2022). Employees’ privacy perceptions: exploring the dimensionality and antecedents of personal data sensitivity and willingness to disclose. Proceedings on Privacy Enhancing Technologies2022(2), 68-94. https://doi.org/10.2478/popets-2022-0036

Data Protection Authorities’ Guidance 

Article 29 Working Party Opinion 2/2017 on data processing at work Adopted on 8 June 2017 https://ec.europa.eu/newsroom/article29/items/610169/en 

Case Law 

European Court of Human Rights

Bărbulescu V. Romania Court (Fourth Section) 61496/08 https://hudoc.echr.coe.int/eng?i=001-159906

Copland v. The United Kingdom Court (Fourth Section) 62617/00 2007 https://hudoc.echr.coe.int/eng?i=001-79996

Libert v. France Court (Fifth Section) 588/13 2018 https://hudoc.echr.coe.int/eng?i=001-181273

Antović And Mirković V. Montenegro Court (Second Section) 70838/13 2017 https://hudoc.echr.coe.int/eng?i=001-178904

López Ribalda And Others v. Spain Court (Grand Chamber) (Applications nos. 1874/13 and 8567/13) 2019 https://hudoc.echr.coe.int/eng?i=001-197098

Köpke v. Germany (Fifth Section) 420/07 2010 http://www.bailii.org/eu/cases/ECHR/2010/1725.html

Radu v. The Republic of Moldova (Third Section) 50073/07 2014 https://hudoc.echr.coe.int/eng?i=001-142398

Surikov v. Ukraine (Fifth Section) 41788/06 2017 https://hudoc.echr.coe.int/eng?i=001-170462

Court of Justice of the European Union

Worten — Equipamentos para o Lar SA v Autoridade para as Condições de Trabalho (ACT) (Third Chamber) ECLI:EU:C:2013:355 https://eur-lex.europa.eu/legal-content/EN/ALL/?uri=CELEX:62012CJ0342

- Detainees

Data Protection Authorities’ Guidance 

European Data Protection Board Guidelines 05/2022 on the use of facial recognition technology in the area of law enforcement https://edpb.europa.eu/system/files/2022-05/edpb-guidelines_202205_frtlawenforcement_en_1.pdf

European Data Protection Board Recommendations 01/2021 on the adequacy referential under the Law Enforcement Directive https://edpb.europa.eu/sites/default/files/files/file1/recommendations012021onart.36led.pdf_en.pdf 

Case Law

European Court of Human Rights

Marper V. The United Kingdom Grand Chamber (Applications nos. 30562/04and 30566/04) 2008 https://hudoc.echr.coe.int/eng?i=001-90051

Aycaguer V. France Court (Fifth Section) 8806/12 2017 https://hudoc.echr.coe.int/eng?i=001-175007

M.K. V. France Court (Fifth Section) 19522/09 2013 https://hudoc.echr.coe.int/eng?i=001-119075

R.E. v. the United Kingdom Court (Fourth Section) 62498/11 2015 https://hudoc.echr.coe.int/fre?i=001-158159

Gaughran v. the United Kingdom 45245/15 2020 https://hudoc.echr.coe.int/fre?i=002-12731

Matwiejczuk v. Poland (Fourth Section) 37641/97 2003 https://hudoc.echr.coe.int/eng?i=001-61482

Kennedy v. The United Kingdom (Fourth Section) 26839/05 2010 https://hudoc.echr.coe.int/eng?i=001-98473

Perry v. The United Kingdom (Third Section) 63737/00 2003 https://hudoc.echr.coe.int/eng?i=001-61228

Zaichenko v. Ukraine (Fifth Section) 29875/02 2007 https://hudoc.echr.coe.int/eng?i=001-83417

P.N. v. Germany (Fifth Section) 74440/17 2020 https://hudoc.echr.coe.int/eng?i=001-202758

Allan v. The United Kingdom (Fourth Section) 48539/99 2002 https://hudoc.echr.coe.int/eng?i=001-60713

Wisse v. France (Second Section) 71611/01 2005 Official Language in French: https://hudoc.echr.coe.int/eng?i=001-71735 Unofficial English Translation: In pp. 117-118 https://rm.coe.int/new-caselaw-06-2021/1680a2fc58

Izmestyev v. Russia (Third Section) 74141/10 2019 Official Language in French: https://hudoc.echr.coe.int/eng?i=001-195567 Unofficial English Translation: In pp. 342-344 https://rm.coe.int/new-caselaw-06-2021/1680a2fc58 

- Other

ACLU (2022) In Big Win, Settlement Ensures Clearview AI Complies With Groundbreaking Illinois Biometric Privacy Law https://www.aclu-il.org/en/press-releases/big-win-settlement-ensures-clearview-ai-complies-groundbreaking-illinois-biometric

Non-discrimination and data protection

Academic writings 

Kamiran, F.,  Calders, T.,  & Pechenizkiy, M. (2013) Techniques for Discrimination-Free Predictive Models, in Custers et al. (eds) Discrimination and Privacy in the Information Society, Heidelberg: Springer. https://doi.org/10.1007/978-3-642-30487-3_12 

Kasy, M., & Abebe, R. (2021, March). Fairness, equality, and power in algorithmic decision-making. In Proceedings of the 2021 ACM Conference on Fairness, Accountability, and Transparency, 576-586. https://doi.org/10.1145/3442188.3445919 

Mesch, G. S., & Dodel, M. (2018). Low self-control, information disclosure, and the risk of online fraud. American Behavioral Scientist62(10), 1356-1371 https://doi.org/10.1177/0002764218787854

Patton, D. U., Brunton, D. W., Dixon, A., Miller, R. J., Leonard, P., & Hackman, R. (2017). Stop and frisk online: Theorizing everyday racism in digital policing in the use of social media for identification of criminal conduct and associations. Social Media+ Society3(3). https://doi.org/10.1177/2056305117733344

Krupiy, Tetyana. “Why the Proposed Artificial Intelligence Regulation Does Not Deliver on the Promise to Protect Individuals from Harm.” European Law Blog, 2021. https://europeanlawblog.eu/2021/07/23/why-the-proposed-artificial-intelligence-regulation-does-not-deliver-on-the-promise-to-protect-individuals-from-harm/ 

Krupiy, Tetyana (Tanya). “A Vulnerability Analysis: Theorising the Impact of Artificial Intelligence Decision-Making Processes on Individuals, Society and Human Diversity from a Social Justice Perspective.” Computer Law and Security Review 38 (2020): 105429. https://doi.org/10.1016/j.clsr.2020.105429 

Tzanou, Maria. “The Future of Eu Data Privacy Law: Towards a More Egalitarian Data Privacy.” Journal of International and Comparative Law 7, no. 2 (2020): 449–70. https://ssrn.com/abstract=3710528 

Case law

Court of Justice of the European Union

Heinz Huber v. Bundesrepublik Deutschland (Grand Chamber) ECLI:EU:C:2008:724 https://curia.europa.eu/juris/document/document.jsf;jsessionid=8DD1C951C52E367EC885CE5EC4916346?text=&docid=76077&pageIndex=0&doclang=en&mode=lst&dir=&occ=first&part=1&cid=897854 

Relevant external projects

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Gendering surveillance

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