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The International Observatory on Vulnerable People In data protection

Resources

Disclaimer: The resources are arranged per thematic sections to facilitate the consultation. However, we are aware of the intersections and overlaps thereof. And that AI is generating new categories outside the traditional ones. 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.

Patients

- Academic writings

Bakker, A. R. (1991). Computers in hospitals, vulnerability aspects. In Medical Informatics Europe 1991: Proceedings, Vienna, Austria, August 19–22, 1991 (pp. 62-66). Berlin, Heidelberg: Springer Berlin Heidelberg. https://doi.org/10.1007/978-3-642-93503-9_10

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

Dhinakaran, D., & Prathap, P. J. (2022). Protection of data privacy from vulnerability using two-fish technique with Apriori algorithm in data mining. The Journal of Supercomputing78(16), 17559-17593. https://doi.org/10.1007/s11227-022-04517-0

Fosch-Villaronga, E., Felzmann, H., Ramos-Montero, M., & Mahler, T. (2018, October). Cloud services for robotic nurses? Assessing legal and ethical issues in the use of cloud services for healthcare robots. In 2018 IEEE/RSJ International Conference on Intelligent Robots and Systems (IROS) (pp. 290-296). IEEE. DOI:10.1109/IROS.2018.8593591

Islam, M. A. (2022). Privacy risks and security threat strategy to optimize the vulnerability in health information system (his). International Journal of Advanced Networking and Applications14(1), 5271-5276.

Poyner, I. K., & Sherratt, R. S. (2018, March). Privacy and security of consumer IoT devices for the pervasive monitoring of vulnerable people. In Living in the Internet of Things: Cybersecurity of the IoT-2018 (pp. 1-5). IET. DOI:10.1049/cp.2018.0043

Shivayogi, P. (2013). Vulnerable population and methods for their safeguard. Perspectives in clinical research4(1), 53. doi: 10.4103/2229-3485.106389

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

- Laws

- 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

- Policy documents

- Global Developments

- Others