Performing the Union: the Prüm Decision and the European dream

In 2005, seven European countries signed the so-called Prüm Treaty to increase transnational collaboration in combating international crime, terrorism and illegal immigration. Three years later, the Treaty was adopted into EU law. EU member countries are obliged to have systems in place to allow authorities of other member states access to nationally held data on DNA, fingerprints, and vehicles by August 2011. In this paper, we discuss the conditions of possibility for the Prüm network to emerge, and argue that rather than a linear story of technological and political convergence and harmonisation, the (hi)story of Prüm is heterogeneous and patchy. This is reflected also in the early stages of implementing the Prüm Decision which proves to be more difficult than it was hoped by the drivers of the Prüm process. In this sense, the Prüm network sits uncomfortably with success stories of forensic science (many of which served the goal of justifying the expansion of technological and surveillance systems). Instead of telling a story of heroic science, the story of Prüm articulates the European dream: One in which goods, services, and people live and travel freely and securely

Forensic human identification: Generating Y-STR data for the South African population

Salt River Mortuary (SRM), Cape Town, investigates ~3500 cases of unnatural death annually, with an apparent burden of unclaimed bodies. A retrospective review was first undertaken to assess the number of these individuals who remained unidentified. Medicolegal records were examined (2010-2017), and ~9% of cases remained unidentified each year. DNA analysis was performed in 23.5% of cases. At the time of this study, unidentified bodies were in storage for up to two years, pending pauper burial. DNA profiling assists forensic human identification, and the analysis of markers on the Y-chromosome has particular importance in kinship analysis. To evaluate the statistical probability of DNA profiles matching between samples, reference data from the background population is required. Such data for the Y-chromosome is lacking for some populations groups in South Africa (SA). As such this study aimed to generate Y-chromosome data relevant to SA. Second to this, the obtainability of DNA profiles from unidentified decedents at SRM, prior to pauper burial, was investigated. Biological samples were obtained from 653 SA individuals (living: n=480; deceased: n=173) belonging to four major population groups. Following internal validation, samples were processed using the Promega PowerPlex® Y23 System. A cohort-representative subset of DNA profiles were also generated using the forensically validated Next Generation Sequencing (NGS) assay on the MiSeq FGx™ system, to assess concordance. Statistical analysis was performed using Arlequin and STATA packages. Full DNA profiles (i.e. haplotypes) were obtained from 626 samples (African: n=183; Coloured: n=170; Indian/Asian: n=111; White: n=162), with 599 haplotypes being unique to a single individual. Following optimisation, haplotypes were obtained from >99% and 85% of living and deceased individuals, respectively. Haplotypes were generated from numerous individuals stored for over one year, and DNA profile quality was not associated with time between death declaration and sample collection. NGS results confirmed the presence of one micro-variant and resolved allele-calling in five instances where the capillary electrophoresis assay was incorrect. Thus, concordance was observed in 98% of loci reviewed. Overall, haplotypes were successfully obtained for four different SA population groups, including refrigerated decedents, even 887 days after death declaration. This demonstrates that DNA profiling can be successful for decedents and efforts should be made to store DNA profiles for the possibility of familial searching and identification, even after burial. Identification of the multitude of unclaimed bodies at forensic facilities nationwide holds immense value for living family members, and provides closure for the acceptance of death and life thereafter

Critically Envisioning Biometric Artificial Intelligence in Law Enforcement

This report presents an overview of the Critically Exploring Biometric AI Futures project led by the University of Edinburgh in partnership with the University of Stirling. This short 3-month project explored the use of new Biometric Artificial Intelligence (AI) in law enforcement, the challenges of fostering trust around deployment and debates surrounding social, ethical and legal concerns

Critically Envisioning Biometric Artificial Intelligence in Law Enforcement

This report presents an overview of the Critically Exploring Biometric AI Futures project led by the University of Edinburgh in partnership with the University of Stirling. This short 3-month project explored the use of new Biometric Artificial Intelligence (AI) in law enforcement, the challenges of fostering trust around deployment and debates surrounding social, ethical and legal concerns

Advances in Forensic Genetics

The book has 25 articles about the status and new directions in forensic genetics. Approximately half of the articles are invited reviews, and the remaining articles deal with new forensic genetic methods. The articles cover aspects such as sampling DNA evidence at the scene of a crime; DNA transfer when handling evidence material and how to avoid DNA contamination of items, laboratory, etc.; identification of body fluids and tissues with RNA; forensic microbiome analysis with molecular biology methods as a supplement to the examination of human DNA; forensic DNA phenotyping for predicting visible traits such as eye, hair, and skin colour; new ancestry informative DNA markers for estimating ethnic origin; new genetic genealogy methods for identifying distant relatives that cannot be identified with conventional forensic DNA typing; sensitive DNA methods, including single-cell DNA analysis and other highly specialised and sensitive methods to examine ancient DNA from unidentified victims of war; forensic animal genetics; genetics of visible traits in dogs; statistical tools for interpreting forensic DNA analyses, including the most used IT tools for forensic STR-typing and DNA sequencing; haploid markers (Y-chromosome and mitochondria DNA); inference of ethnic origin; a comprehensive logical framework for the interpretation of forensic genetic DNA data; and an overview of the ethical aspects of modern forensic genetics

National strategy for research and data on children’s lives 2011—2016.

This research and data strategy is published in fulfilment of a commitment given in the social partnership agreement Towards 2016 for the development and publication of a National Data Strategy on Children’s Lives (Department of the Taoiseach, 2006a). The strategy has been developed in the context of substantial investment in the creation and transfer of knowledge for the purpose of improving citizen’s lives. This has resulted in a growing knowledge base across many different areas and in Ireland, as elsewhere, has led to increased support and concern for evidence-informed policy and practice. The initial intention in developing this strategy was to focus on data only, particularly on official and other statistical holdings, as has been the case with strategies developed by other Government departments. This strategy goes beyond this type of approach and both aligns and mobilises key issues of relevance to both research and data around children’s lives. In doing so, it provides a framework for improving understandings of children’s lives across all sectors, including policy-makers, service providers, researchers, children, families and communities. The inclusion of both data and research is an explicit recognition of the importance of achieving a comprehensive understanding of children’s lives. Although there is much overlap between research and data, in general, agendas have evolved separately from each other and issues arising are usually addressed in different fora and through individual strategic developments. The recent Government decision to create a Department of Children and Youth Affairs, which incorporates a number of policy areas on children and youth people (such as early childhood care and education, youth justice, child protection and welfare, children and young people’s participation, research on children and young people, youth work and cross-cutting initiatives for children), provides an important infrastructure through which evidence can be at the centre of policy and practice around children’s lives. This strategy, through its Action Plan (see Chapter 5), will play an important part in informing policy and practice developments by facilitating the creation, synthesis and transfer of the best available knowledge in the area for the purpose of ensuring children’s lives benefit from research and data. While the Department of Children and Youth Affairs is responsible for certain actions in the strategy and will have an oversight role in relation to the overall action plan, individual Government departments or other organisations that have agreed to carry out specific actions in this strategy will be responsible for delivering on these. An understanding of the effects of policy decisions, supports and interventions, as well as the factors in and impact of changes and transitions at various points in the lifecycle, is critical in informing decisions aimed at improving outcomes. This is particularly the case with children, where significant changes in their growth, development and outcomes take place within a relatively short period of time. Much progress has been made in understanding children’s lives in Ireland. Further strategic development, however, can assist in: • providing leadership in the area of research and data on children’s lives; • facilitating a comprehensive approach to understanding the lives of all children, with a particular focus on the lives of children with additional needs; • identifying priority areas, minimising duplication of effort and maximising value for money; • coordinating research and data developments of relevance to children’s lives; • systematically building research, evaluation and utilisation capacity. Overview Why a Research and Data Strategy on Children’s Lives? • Development of strategy • Aim and objectives of strategy 1. Context for a National Strategy for Research and Data on Children’s Lives • Investment and policy development in research • Research governance developments • Investment and policy development in data • National investment in children’s research • National Children’s Research Programme • Commissioned research programme • Capacity-building programme • A programme to develop the infrastructure around data and research on children’s lives • Knowledge transfer around children’s lives • Early Intervention Programme • Summary 2. Development of National Strategy for Research and Data on Children’s Lives • Children’s outcomes • Process of development • Identification of potential gaps • Review of recommendations in national policy • Consultations • Analysis of inputs • Analysis of information gaps and availability • Consultation on draft actions • Bilateral discussions with stakeholders • Summary 3. Information Gaps, Sources and Priorities • Outcome Area 1: Children will be healthy, both physically and mentally • Outcome Area 2: Children will be supported in active learning • Outcome Area 3: Children will be safe from accidental and intentional harm, and secure in the immediate and wider physical environment • Outcome Area 4: Children will be economically secure • Outcome Area 5: Children will be part of positive networks of family, friends, neighbours and the community, and included and participating in society 4. Cross-cutting issues influencing National Strategy for Research and Data on Children’s Lives Development of a national strategic approach to improving information around children’s lives • Improvement of administrative data systems • Build capacity across all areas of research and data development • Support evidence-informed policy and practice • Summary 5. Action Plan • Implementation and oversight • Action Plan References Appendices Appendix 1: DCYA National Children’s Research Programme — Commissioned Research Appendix 2: DCYA National Children’s Research Programme — Scholarship Programme Appendix 3: Review of national policy documents to inform National Strategy for Research and Data on Children’s Lives Appendix 4: Online Consultation Questionnaire Appendix 5: Respondents to Online Consultation Appendix 6: Inventory of data sources Appendix 7: Consultations conducted with children and young people under the OMCYA/DCYA Participation Programme Appendix 8: National Statistics Board’s (2004) Best Practice Guidelines for the development of a data strategy Appendix 9: Research and Data Strategy Steering Group Membershi

The SIOPE strategic plan: A European cancer plan for children and adolescents

[EN] Within the European Network for Cancer research in Children and Adolescents (ENCCA), SIOPE and the European paediatric haematology-oncology community have established a long-term sustainable Strategic Plan to increase the cure rate and the quality of survivorship for children and young people with cancer over the next ten years. The ultimate goal is to increase the diseaseand late-effect- free survival after 10 years from the diagnosis, and beyond. As a result of several initiatives to involve all stakeholders and ensure that all their points of view would be taken into account in the document, this long-term sustainable Strategic Plan has achieved a broad consensus, and will serve as the "European Cancer Plan for Children and Adolescents".This publication has received funding from the European Union's Seventh Framework Programme for research, technological development and demonstration under the project ENCCA (European Network for Cancer research in Children and Adolescents), grant agreement nr. HEALTH-F2-2011-261474.Vassal, G.; Schrappe, M.; Pritchard-Jones, K.; Arnold, F.; Basset-Salom, L.; Biondi, A.; Bode, G.... (2016). The SIOPE strategic plan: A European cancer plan for children and adolescents. Journal of Cancer Policy. 8:17-32. https://doi.org/10.1016/j.jcpo.2016.03.007S1732

Identifying and appraising promising sources of UK clinical, health and social care data for use by NICE

This report aimed to aid the National Institute of Health and Care Excellence (NICE) in identifying opportunities for greater use of real-world data within its work. NICE identified five key ways in which real-world data was currently informing its work, or could do so in the future through: (i) researching the effectiveness of interventions or practice in real-world (UK) settings (ii) auditing the implementation of guidance (iii) providing information on resource use and evaluating the potential impact of guidance (iv) providing epidemiological information (v) providing information on current practice to inform the development of NICE quality standards. This report took a broad definition of ‘real-world’ data and created a map of UK sources, informed by a number of experts in real-world data, as well as a literature search, to highlight where some of the opportunities may lie for NICE within its clinical, public health and social care remit. The report was commissioned by the NICE, although the findings are likely to be of wider interest to a range of stakeholders interested in the role of real-world data in informing clinical, social care and public health decision-making. Most of the issues raised surrounding the use and appraisal of real-world data are likely to be generic, although the choice of datasets that were profiled in-depth reflected the interests of NICE. We discovered 275 sources that were named as real-world data sources for clinical, social care or public health investigation, 233 of which were deemed as active. The real-world data landscape therefore is highly complex and heterogeneous and composed of sources with different purposes, structures and collection methods. Some real-world data sources are purposefully either set-up or re-developed to enhance their data linkages and to examine the presence/absence/effectiveness of integrated patient care; however, such sources are in the minority. Furthermore, the small number of real-world data sources that are designed to enable the monitoring of care across providers, or at least have the capability to do so at a national level, have been utilised infrequently for this purpose in the literature. Data that offer the capacity to monitor transitions between health and social care do not currently exist at a national level, despite the increasing recognition of the interdependency between these sectors. Among the data sources we included, it was clear that no one data source represented a panacea for NICE’s real world data needs. This does highlight the merits and importance of data linkage projects and is suggestive of a need to triangulate evidence across different data, particularly in order to understand the feasibility and impact of guidance. There exists no overall catalogue or repository of real-world data sources for health, public health and social care, and previous initiatives aimed at creating such a resource have not been maintained. As much as there is a need for enhanced usage of the data, there is also a need for taking stock, integration, standardisation, and quality assurance of different sources. This research highlights a need for a systematic approach to creating an inventory of sources with detailed metadata and the funding to maintain this resource. This would represent an essential first step to support future initiatives aimed at enhancing the use of real-world data