Optimising cohort data in Europe

Hewitt JE. The Ethical, Legal and Regulatory Issues Associated with Pharmacogenomics: Systematically Quantifying the Literature. Journal of Law and Medicine 2018 Apr;25(3):782-793. Hodgson S, Fecht D, Gulliver J, Iyathooray Daby H, Piel FB, Yip F, Strosnider H, Hansell A, Elliott P. Availability, access, analysis and dissemination of small-area data. International Journal of Epidemiology 2020 Apr 1;49 Suppl 1(Suppl 1):i4-i14. doi: 10.1093/ije/dyz051 Hulsen T, Jamuar SS, Moody AR, Karnes JH, Varga O, Hedensted S, Spreafico R, Hafler DA, McKinney EF. From Big Data to Precision Medicine. Frontiers in Medicine (Lausanne). 2019 Mar 1;6:34. https://doi.org/10.3389/fmed.2019.00034 Jones KH, Ford DV, Ellwood-Thompson S, Lyons RA. The UK Secure eResearch Platform for public health research: a case study. The Lancet 2016;388: S62. https://doi. org/10.1016/S0140-6736(16)32298-X Juengst ET, Meslin EM. Sharing with Strangers: Governance Models for Borderless Genomic Research in a Territorial World. Kennedy Institute of Ethics Journal 2019;29(1):67-95. https://doi.org/10.1353/ken.2019.0000 Kiehntopf M. Biobanking – current questions and positions. Journal of Laboratory Medicine 2019;43(6):287-290. Klingstrom T, Bongcam-Rudloff E, Reichel J. Legal & ethical compliance when sharing biospecimen. Briefings in Functional Genomics 2018 Jan 1;17(1):1-7. https://doi. org/10.1093/bfgp/elx008 Kondo Y, Miyata A, Ikeuchi U, Nakahara S, Nakashima K, Ōnishi H, et al. Interlinking open science and community-based participatory research for socio-environmental issues. Current Opinion in Environmental Sustainability 2019;39:54-61. https://doi. org/10.1016/j.cosust.2019.07.001 Kostkova P. Disease surveillance data sharing for public health: the next ethical frontiers. Life Sciences Society and Policy 2018 Jul 4;14(1):16. https://doi.org/10.1186/s40504 018-0078-x Lehner-Mear R. Negotiating the ethics of Netnography: developing an ethical approach to an online study of mother perspectives. International Journal of Social Research Methodology 2020;23(2):123-137. https://doi.org/10.1080/13645579.2019.163487 9 Lesko CR, Jacobson LP, Blthoff KN, Abraham AG, Gange SJ, Moore RD, et al. Collaborative, pooled and harmonized study designs for epidemiologic research: challenges and opportunities. International Journal of Epidemiology 2018;47(2):654-668. https:// doi.org/10.1093/ije/dyx283 Machuletz D & Böhme R. Multiple purposes, multiple problems: A user study of consent dialogs after GDPR. Proceedings on Privacy Enhancing Technologies 2020;2:481-498. https://doi.org/10.2478/popets-2020-0037

Made with FlippingBook flipbook maker