IJPDS International Journal of Population Data Science IJPDS 2399-4908 Swansea University 10.23889/ijpds.v7i3.2027 7:03:233 Using linked administrative data to evaluate and improve the quality of end-of-life care in nursing homes. Cunningham-Burley Sarah 1 McCartney Daniel L 1 Campbell Archie 1 Flaig Robin 1 El Orange Clare 2 Porteous Carol 1 Aitken Mhairi 1 Mulholland Ciaran 3 Davidson Sara 3 McCafferty Selena M 2 Murphy Lee 1 Wrobel Nicola 1 McCafferty Sarah 1 Wallace Karen 4 Stclair David 4 Kerr Shona 1 Hayward Caroline 1 McIntosh Andrew M 1 Sudlow Cathie 1 Marioni Riccardo E 1 Pell Jill 5 Miedzybrodzka Zosia 5 Porteous David J 1 University of Edinburgh NHS GGC Biorepository Ipsos MORI Scotland University of Aberdeen University of Glasgow 092022 2022 7 3 2027 This work is licenced under a Creative Commons Attribution 4.0 International License. This article is available from the IJPDS website at: https://ijpds.org/article/view/2027 Objectives

There were two objectives to this study: 1) to gauge public opinion on the use of Guthrie card-derived blood samples for epidemiological and biological research; and 2) to evaluate the feasibility of recovering meaningful molecular data from these samples.

 Approach

To address the first objective, a 2-day Citizens’ Jury was conducted in partnership with Ipsos MORI, comprising a diverse adult sample in terms of age, sex, working status and social grade (n=20). Jurors were asked whether research access to Guthrie card blood tests would be in the public interest. To address the second objective, DNA methylation (DNAm) was profiled from samples from 58 Generation Scotland participants, whose Guthrie cards had been stored from birth for between 32 and 38 years. Analyses were performed on Guthrie DNAm samples to determine whether previously-reported associations with perinatal maternal smoking behaviours were detectable.

 Results

The Citizens’ Jury yielded an overall positive response towards data sharing for health research. Concerns were raised about data protection and security, control and oversight, and commercial use. The overall verdict was that access to Guthrie card data would be in the public interest, conditional on the purpose of the research, regulated access procedures, ethical oversight and provision of opportunities for participants to opt out.

DNAm detection rates from Guthrie samples were lower than from samples stored in tubes. However, it was possible to confirm linkage to the correct individuals in Generation Scotland using DNAm-derived estimates of genotype and sex. A significant association was observed between a DNAm-based score for smoking and perinatal maternal smoking status derived from the baseline Generation Scotland questionnaire.

 Conclusion

We showed that: 1) public support exists for using Guthrie samples in research, conditional on certain safeguards; 2) DNAm can be profiled from cards stored for up to 38 years and can predict maternal smoking behaviour. Guthrie cards are a potentially valuable resource for epidemiological studies and predicting health outcomes.