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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. 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

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

- 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