Optimising cohort data in Europe

Salokannel M, Tarkkala H, Snell K. Legacy samples in Finnish biobanks: social and legal issues related to the transfer of old sample collections into biobanks. Human Genetics 2019;138(11-12):1287-1299. https://doi.org/10.1007/s00439-019-02070-0 Saunders G, Baudis M, Becker R, Beltran S, Béroud C, Birney E, et al. Leveraging European infrastructures to access 1 million human genomes by 2022. Nature Reviews. Genetics 2019;20(11):693-701. https://doi.org/10.1038/s41576-019-0156-9 Shabani M. The Data Governance Act and the EU’s move towards facilitating data sharing. Molecular Systems Biology 2021 Mar;17(3):e10229. https://doi.org/10.15252/ msb.202110229 Shadbolt N, O’Hara K, De Roure DC, Hall W. “The Theory and Practice of Social Machines.” Lecture Notes in Social Networks 2019. https://doi.org/10.1007/978-3-030-10889-2 Slokenberga S, Tzortzatou O, Reichel J. GDPR and biobanking: Individual rights, public interest and research regulation across Europe (p. 434). 1st ed . Springer Nature; 2021. https://doi.org/10.1007/978-3-030-49388-2 Steinbach R, Gaur N, Stubendorff B, Witte OW, Grosskreutz J. Developing a neuroimaging biomarker for amyotrophic lateral sclerosis: multi-center data sharing and the road to a “Global Cohort”. Frontiers in Neurology 2018;9:1055. https://doi.org/10.3389/ fneur.2018.01055 . Stommel W, Rijk LD. Ethical approval: none sought. How discourse analysts report ethical issues around publicly available online data. Research Ethics 2021;17(3): 275-297. https://doi.org/10.1177/1747016120988767 Sun Z, Strang KD, Pambel F. Privacy and security in the big data paradigm. Journal of Computer Information Systems 2018;58:146-155. https://doi.org/10.1080/0887441 7.2017.1418631 Taylor J, Pagliari C. Mining social media data: How are research sponsors and researchers addressing the ethical challenges? Research Ethics 2018;14(2):1-39. https://doi. org/10.1177%2F1747016117738559 Thorogood A. International Data Sharing and Rare Disease: The Importance of Ethics and Patient Involvement. In: Wu ZH, editor. Rare Diseases [Internet]. London: IntechOpen; 2020 [cited 2022 Jun 30]. Available from: https://www.intechopen.com/ chapters/71101 doi: 10.5772/intechopen.91237 Townend D. Conclusion: harmonisation in genomic and health data sharing for research: an impossible dream? Human Genetics 2018;137(8):657-664. https://doi. org/10.1007/s00439-018-1924-x Umbach N, Beißbarth T, Bleckmann A, Duttge G, Flatau L, König A, Kuhn J, Perera-Bel J, Roschauer J, Schulze TG, Schweda M, Urban A, Zimmermann A, Sax U. Clinical application of genomic high-throughput data: Infrastructural, ethical, legal and psychosocial aspects. European Neuropsychopharmacology 2020 Feb;31:1-15. https://doi.org/10.1016/j.euroneuro.2019.09.008