Response to Privacy as a Public Good

In the spirit of moving forward the theoretical and empirical scholarship on privacy as a public good, this response addresses four issues raised by Professors Fairfield and Engel’s article: first, their depiction of individuals in groups; second, suggestions for clarifying the concept of group; third, an explanation of why the platforms on which groups exist and interact needs more analysis; and finally, the question of what kind of government intervention might be necessary to protect privacy as a public good

Towards Value-Sensitive Learning Analytics Design

To support ethical considerations and system integrity in learning analytics, this paper introduces two cases of applying the Value Sensitive Design methodology to learning analytics design. The first study applied two methods of Value Sensitive Design, namely stakeholder analysis and value analysis, to a conceptual investigation of an existing learning analytics tool. This investigation uncovered a number of values and value tensions, leading to design trade-offs to be considered in future tool refinements. The second study holistically applied Value Sensitive Design to the design of a recommendation system for the Wikipedia WikiProjects. To proactively consider values among stakeholders, we derived a multi-stage design process that included literature analysis, empirical investigations, prototype development, community engagement, iterative testing and refinement, and continuous evaluation. By reporting on these two cases, this paper responds to a need of practical means to support ethical considerations and human values in learning analytics systems. These two cases demonstrate that Value Sensitive Design could be a viable approach for balancing a wide range of human values, which tend to encompass and surpass ethical issues, in learning analytics design.Comment: The 9th International Learning Analytics & Knowledge Conference (LAK19

Not interesting enough to be followed by the NSA: An analysis of Dutch privacy attitudes

Open curtains and a careless attitude. The Dutch are described as holding an indifferent stance towards privacy in the aftermath of Snowden’s revelations of far-reaching government surveillance. But are Dutch reactions as aloof as often claimed? This study provides an in-depth overview of privacy attitudes in the Dutch debate about the National Security Agency (NSA) leaks, showing a greater variety of sentiments than anticipated. A qualitative frame analysis and a quantitative descriptive analysis resulted in six frames, which convey distinct privacy attitudes. Online and offline as well as professional and non-journalistic content in the debate displays a different distribution of frames. The frames, ranging from an “End justifies the means” attitude to an anxious fear of an “Orwellian dystopia”, are placed in a larger framework as the research demonstrates the connection to existing theories about privacy and surveillance. Dutch discussions about the NSA revelations often display a trade-off narrative balancing safety against privacy, and include (de)legitimisation strategies. These outcomes are in line with previous studies about mediated surveillance debates, which indicates that privacy attitudes transcend national boundaries. However, the inclusion of user-generated content adds an individual dimension to the existing body of research and reveals a personal perspective on surveillance issues

Mortality from gastrointestinal congenital anomalies at 264 hospitals in 74 low-income, middle-income, and high-income countries: a multicentre, international, prospective cohort study

Summary Background Congenital anomalies are the fifth leading cause of mortality in children younger than 5 years globally. Many gastrointestinal congenital anomalies are fatal without timely access to neonatal surgical care, but few studies have been done on these conditions in low-income and middle-income countries (LMICs). We compared outcomes of the seven most common gastrointestinal congenital anomalies in low-income, middle-income, and high-income countries globally, and identified factors associated with mortality. Methods We did a multicentre, international prospective cohort study of patients younger than 16 years, presenting to hospital for the first time with oesophageal atresia, congenital diaphragmatic hernia, intestinal atresia, gastroschisis, exomphalos, anorectal malformation, and Hirschsprung’s disease. Recruitment was of consecutive patients for a minimum of 1 month between October, 2018, and April, 2019. We collected data on patient demographics, clinical status, interventions, and outcomes using the REDCap platform. Patients were followed up for 30 days after primary intervention, or 30 days after admission if they did not receive an intervention. The primary outcome was all-cause, in-hospital mortality for all conditions combined and each condition individually, stratified by country income status. We did a complete case analysis. Findings We included 3849 patients with 3975 study conditions (560 with oesophageal atresia, 448 with congenital diaphragmatic hernia, 681 with intestinal atresia, 453 with gastroschisis, 325 with exomphalos, 991 with anorectal malformation, and 517 with Hirschsprung’s disease) from 264 hospitals (89 in high-income countries, 166 in middleincome countries, and nine in low-income countries) in 74 countries. Of the 3849 patients, 2231 (58·0%) were male. Median gestational age at birth was 38 weeks (IQR 36–39) and median bodyweight at presentation was 2·8 kg (2·3–3·3). Mortality among all patients was 37 (39·8%) of 93 in low-income countries, 583 (20·4%) of 2860 in middle-income countries, and 50 (5·6%) of 896 in high-income countries (p<0·0001 between all country income groups). Gastroschisis had the greatest difference in mortality between country income strata (nine [90·0%] of ten in lowincome countries, 97 [31·9%] of 304 in middle-income countries, and two [1·4%] of 139 in high-income countries; p≤0·0001 between all country income groups). Factors significantly associated with higher mortality for all patients combined included country income status (low-income vs high-income countries, risk ratio 2·78 [95% CI 1·88–4·11], p<0·0001; middle-income vs high-income countries, 2·11 [1·59–2·79], p<0·0001), sepsis at presentation (1·20 [1·04–1·40], p=0·016), higher American Society of Anesthesiologists (ASA) score at primary intervention (ASA 4–5 vs ASA 1–2, 1·82 [1·40–2·35], p<0·0001; ASA 3 vs ASA 1–2, 1·58, [1·30–1·92], p<0·0001]), surgical safety checklist not used (1·39 [1·02–1·90], p=0·035), and ventilation or parenteral nutrition unavailable when needed (ventilation 1·96, [1·41–2·71], p=0·0001; parenteral nutrition 1·35, [1·05–1·74], p=0·018). Administration of parenteral nutrition (0·61, [0·47–0·79], p=0·0002) and use of a peripherally inserted central catheter (0·65 [0·50–0·86], p=0·0024) or percutaneous central line (0·69 [0·48–1·00], p=0·049) were associated with lower mortality. Interpretation Unacceptable differences in mortality exist for gastrointestinal congenital anomalies between lowincome, middle-income, and high-income countries. Improving access to quality neonatal surgical care in LMICs will be vital to achieve Sustainable Development Goal 3.2 of ending preventable deaths in neonates and children younger than 5 years by 2030