Information systems for crisis response and management:The EU data protection regulation, privacy by design and certification

With technological development in crisis management reaching a point at which there is wide-scale aggregation of data, including social media, there is a need to focus strongly upon the position of end users in order to uphold data protection principles. Recent wide-ranging European Union legal reforms, finalized in 2016, have enshrined the concept of data protection by design and paved the way for certification schemes to validate compliance. There is a need for those involved with the practical development of information systems for crisis management to understand these new developments and determine their practical implications. This paper presents a critical analysis of the reforms, focusing on the interplay between the law and technological design and predicting their impact on crisis management system development

Analysing the role of privacy impact assessments in technological development for crisis management

The ability to harness technology in crisis management has enabled an increase in wide-scale interagency collaboration. This development has occurred alongside a move to accumulate and analyse crowdsourced responses. Given the scale and the nature of the information accessed and collected, there is a pressing need to ensure that technology is developed in a way that protects the interests of end-users and stakeholders. Privacy impact assessments (PIAs) are increasingly used, in certain jurisdictions legally mandated, in projects to foresee risks to privacy and to plan strategies to avoid these. Once implemented, the EU's General Data Protection Regulation will, in certain circumstances, require the need for a PIA. This study focuses upon the PIA process in an EU-funded project with the aim of developing cloud-based disaster response technology. It introduces the project and then gives a background to the PIA process. Insights and observations are then made relating to how the PIA operates, with the aim of drawing conclusions that can both improve the current project and be transferable to other crisis management-focused projects

On anonymity in disasters:Socio-technical practices in emergency management

Disasters are often thought of as exceptions to the norm, where it is ethical to break rules in order to maintain social order and security. Indeed, such exceptions are recognised in high-level international legal provisions such as the European Union’s (EU) Data Protection Regulation, building the expectation that during disasters systems of data sharing and protecting, including anonymity, will have to balance the urgency of the situation, the effort to manage those regulations, and the risks being faced in order to provide the security these protections intend. This paper explores what this means for the practice of anonymity as it examines the tensions between the social and technical practices behind information sharing for disaster management. By examining anonymity as a practice both in relation to how information is sourced from a community being protected and to how information is shared between organisations doing the protecting, this paper opens up the black box of information sharing during disasters to begin to unpack how trust, community, liability, and protection are entangled. As disaster management exposes and juxtapose social and organisational elements that make it work, we find that what anonymity means, and the security and protection anonymity offers, creates a mélange of hope of unprejudiced reception, protection from liabilities, opportunities for shared meaning, limitations to solidarity, reinforcement of power struggles and norms, and the ability to mask difference

ELSI guidelines for networked collaboration and information exchange in PPDR and risk governance

Networked collaboration and information exchange technologies have transformative potential for PPDR and risk governance. However, it is difficult to shape these transformations in a way that supports real world practices of collaboration and sense-making, and it is even more difficult to do so in ways that are ethically, legally and socially sensitive and proactive. This paper presents efforts to construct Ethical, Legal and Social Issues or ‘ELSI’ Guidelines for Networked Collaboration and Information Exchange in PPDR. The Guidelines would facilitate Risk Governance and serve as a living community resource to support the design and use of IT for PPDR and Risk Governanc

Fine-mapping of the HNF1B multicancer locus identifies candidate variants that mediate endometrial cancer risk.

Common variants in the hepatocyte nuclear factor 1 homeobox B (HNF1B) gene are associated with the risk of Type II diabetes and multiple cancers. Evidence to date indicates that cancer risk may be mediated via genetic or epigenetic effects on HNF1B gene expression. We previously found single-nucleotide polymorphisms (SNPs) at the HNF1B locus to be associated with endometrial cancer, and now report extensive fine-mapping and in silico and laboratory analyses of this locus. Analysis of 1184 genotyped and imputed SNPs in 6608 Caucasian cases and 37 925 controls, and 895 Asian cases and 1968 controls, revealed the best signal of association for SNP rs11263763 (P = 8.4 × 10(-14), odds ratio = 0.86, 95% confidence interval = 0.82-0.89), located within HNF1B intron 1. Haplotype analysis and conditional analyses provide no evidence of further independent endometrial cancer risk variants at this locus. SNP rs11263763 genotype was associated with HNF1B mRNA expression but not with HNF1B methylation in endometrial tumor samples from The Cancer Genome Atlas. Genetic analyses prioritized rs11263763 and four other SNPs in high-to-moderate linkage disequilibrium as the most likely causal SNPs. Three of these SNPs map to the extended HNF1B promoter based on chromatin marks extending from the minimal promoter region. Reporter assays demonstrated that this extended region reduces activity in combination with the minimal HNF1B promoter, and that the minor alleles of rs11263763 or rs8064454 are associated with decreased HNF1B promoter activity. Our findings provide evidence for a single signal associated with endometrial cancer risk at the HNF1B locus, and that risk is likely mediated via altered HNF1B gene expression

Genome-wide linkage screen for testicular germ cell tumour susceptibility loci

A family history of disease is a strong risk factor for testicular germ cell tumour (TGCT). In order to identify the location of putative TGCT susceptibility gene(s) we conducted a linkage search in 237 pedigrees with two or more cases of TGCT. One hundred and seventy-nine pedigrees were evaluated genome-wide with an average inter-marker distance of 10 cM. An additional 58 pedigrees were used to more intensively investigate several genomic regions of interest. Genetic linkage analysis was performed with the ALLEGRO software using two model-based parametric analyses and a non-parametric analysis. Six genomic regions on chromosomes 2p23, 3p12, 3q26, 12p13-q21, 18q21-q23 and Xq27 showed heterogeneity LOD (HLOD) scores of greater than 1, with a maximum HLOD of 1.94 at 3q26. Genome-wide simulation studies indicate that the observed number of HLOD peaks greater than one does not differ significantly from that expected by chance. A TGCT locus at Xq27 has been previously reported. Of the 237 pedigrees examined in this study, 66 were previously unstudied at Xq27, no evidence for linkage to this region was observed in this new pedigree set. Overall, the results indicate that no single major locus can account for the majority of the familial aggregation of TGCT, and suggests that multiple susceptibility loci with weak effects contribute to the diseas

Candidate locus analysis of the TERT-CLPTM1L cancer risk region on chromosome 5p15 identifies multiple independent variants associated with endometrial cancer risk.

Several studies have reported associations between multiple cancer types and single-nucleotide polymorphisms (SNPs) on chromosome 5p15, which harbours TERT and CLPTM1L, but no such association has been reported with endometrial cancer. To evaluate the role of genetic variants at the TERT-CLPTM1L region in endometrial cancer risk, we carried out comprehensive fine-mapping analyses of genotyped and imputed SNPs using a custom Illumina iSelect array which includes dense SNP coverage of this region. We examined 396 SNPs (113 genotyped, 283 imputed) in 4,401 endometrial cancer cases and 28,758 controls. Single-SNP and forward/backward logistic regression models suggested evidence for three variants independently associated with endometrial cancer risk (P = 4.9 × 10(-6) to P = 7.7 × 10(-5)). Only one falls into a haplotype previously associated with other cancer types (rs7705526, in TERT intron 1), and this SNP has been shown to alter TERT promoter activity. One of the novel associations (rs13174814) maps to a second region in the TERT promoter and the other (rs62329728) is in the promoter region of CLPTM1L; neither are correlated with previously reported cancer-associated SNPs. Using TCGA RNASeq data, we found significantly increased expression of both TERT and CLPTM1L in endometrial cancer tissue compared with normal tissue (TERT P = 1.5 × 10(-18), CLPTM1L P = 1.5 × 10(-19)). Our study thus reports a novel endometrial cancer risk locus and expands the spectrum of cancer types associated with genetic variation at 5p15, further highlighting the importance of this region for cancer susceptibility.This work was supported by the NHMRC Project Grant (ID#1031333). This work was also supported by Cancer Research UK (C1287/A10118, C1287/A 10710, C12292/A11174, C1281/A12014, C5047/A8384, C5047/A15007, C5047/A10692)This is the published version. It first appeared at http://link.springer.com/article/10.1007%2Fs00439-014-1515-4