Optimising cohort data in Europe

Dobrick CM, Fischer J, Hagen LM. Research Ethics in the Digital Era. Springer, 2018.Dove ES, Garattini C. Expert perspectives on ethics review of international data-intensive research: Working towards mutual recognition. Research Ethics 2018;14(1):1-25. https://doi.org/10.1177/1747016117711972 Ducato R. Data protection, scientific research, and the role of information. Computer Law & Security Review 2020; 37: 105412. https://doi.org/10.1016/j.clsr.2020.105412. Duguet AM, Herveg J. Safeguards and Derogations Relating to Processing for Scientific Purposes: Article 89 Analysis for Biobank Research. In: Slokenberga, S., Tzortzatou, O., Reichel, J. (eds) GDPR and Biobanking. Law, Governance and Technology Series. Springer, Cham, 2021;43. https://doi.org/10.1007/978-3-030-49388-2_7 Dupras C, Beck S, RothsteinMA, Berner A, Saulnier KM, Pinkesz M, et al. Potential (mis) use of epigenetic age estimators by private companies and public agencies: human rights law should provide ethical guidance. Environmental Epigenetics 2019;5(3):dvz018, https://doi.org/10.1093/eep/dvz018 Firchow P, Mac Ginty R. Including hard-to-access populations using mobile phone surveys and participatory indicators. Sociological Methods and Research 2020;49(1):133-160. https://doi.org/10.1177%2F0049124117729702 Fröhlich H, Balling R, Beerenwinkel N, Kohlbacher O, Kumar S, Lengauer T, et al. From hype to reality: data science enabling personalized medicine. BMC Medicine 2018 Aug 27;16(1):150. https://doi.org/10.1186/s12916-018-1122-7 Geneviève LD, Martani A, Mallet MC, Wangmo T, Elger BS. Factors influencing harmonized health data collection, sharing and linkage in Denmark and Switzerland: A systematic review. PLoS One. 2019 Dec 12;14(12):e0226015. https://doi.org/10.1371/journal. pone.0226015 Gold M, Amatniek J, Carrillo MC, Cedarbaum JM, Hendrix JA, Miller BB, et al. Digital technologies as biomarkers, clinical outcomes assessment, and recruitment tools in Alzheimer’s disease clinical trials. Alzheimers & Dementia (New York, N.Y.) 2018;4:234 242. https://doi.org/10.1016/j.trci.2018.04.003 Gopichandran V, Elango V . Data Ethics in Epidemiology. Autonomy, Privacy, Confidentiality and Justice . In: Ethics in Public Health Practice in India. Singapore: Spinger, 2018; pp. 121-137. Guinchard A. Taking proportionality seriously: The use of contextual integrity for a more informed and transparent analysis in EU data protection law. European Law Journal 2018; 24(6), 434-457. https://doi.org/10.1111/eulj.12273 Hansson MG. Striking a Balance Between Personalised Genetics and Privacy Protection from the Perspective of GDPR. In: Slokenberga S, Tzortzatou O, Reichel J (eds) GDPR and Biobanking. Law, Governance and Technology Series. Springer, Cham, 2021;43. https://doi.org/10.1007/978-3-030-49388-2_3

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