Feasibility and ethics of using data from the Scottish newborn blood spot archive for research

Acknowledgements We thank Dr Tom Barlow, Scottish Government Chief Scientists Office for guidance and input into the feasibility studies described here; Dr Sarah Smith, Director of the National Screening Service for facilitating access to the Scottish newborn blood spot archive and sanctioning the work of the Greater Glasgow and Clyde Biorepository; Alexis Smith, Research Nurse at the Greater Glasgow and Clyde Biorepository; Caroline Clark, Mark Davidson and the NHS Grampian Genetics laboratory for technical support in the early feasibility studies, Dr Joan Mackenzie, NHS Scotland blood spot screening service and the Danish Newborn Screening Biorepository for technical advice and support for the pilot DNA sequencing of de-identified newborn blood spot punches. The Citizens’ Jury was funded by a Wellcome Trust Institutional Science Support Fund award to the University of Edinburgh (S.C.B. and D.J.P.). Generation Scotland received core support from the Chief Scientist Office of the Scottish Government Health Directorates [CZD/16/6] and the Scottish Funding Council [HR03006] and is currently supported by the Wellcome Trust [216767/Z/19/Z] award to D.J.P. Baseline DNA methylation was funded by the Wellcome Trust (Wellcome Trust Strategic Award “STratifying Resilience and Depression Longitudinally” (STRADL) Reference 104036/Z/14/Z and Investigator Award 220857/Z/20/Z to A.Mc.I.). The feasibility study was supported in part by HDRI Health Data Research UK substantive hub award (EDIN1) and Chief Scientist Office Scotland (ETM19). C.H. and S.K. are supported by the Medical Research Council University Unit award to the MRC Human Genetics Unit, University of Edinburgh, grant number MC_UU_00007/10, Programme MC_PC_U127592696.Peer reviewedPublisher PD