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.
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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 diseases, 14(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
- 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
- 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