Search results for "Privacy"
showing 10 items of 402 documents
Enabling openness of valuable information resources: Curbing data subtractability and exclusion
2019
In this paper we investigate how data openness can be made possible in communal settings. We adopt a utility perspective that foregrounds the use value of data, conceptualizing them as “goods.” On the basis of this conceptualization we explore 2 key goods' attributes: subtractability and exclusion. Our theoretical basis is built upon concepts from the theory of the commons, power theorizing, and notions related to data and information. Empirically, we investigate openness in the genetics domain through a longitudinal study of the evolving communal infrastructure for data related to 2 genes influencing women's susceptibility to breast and ovarian cancer (BRCA1 and BRCA2). We follow the conti…
Opportunities and challenges for drug development: public-private partnerships, adaptive designs and big data
2016
Drug development faces the double challenge of increasing costs and increasing pressure on pricing. To avoid that lack of perceived commercial perspective will leave existing medical needs unmet, pharmaceutical companies and many other stakeholders are discussing ways to improve the efficiency of drug Research and Development. Based on an international symposium organized by the Medical School of the University of Duisburg-Essen (Germany) and held in January 2016, we discuss the opportunities and challenges of three specific areas, i.e., public-private partnerships, adaptive designs and big data. Public-private partnerships come in many different forms with regard to scope, duration and typ…
Harmonising and linking biomedical and clinical data across disparate data archives to enable integrative cross-biobank research
2015
A wealth of biospecimen samples are stored in modern globally distributed biobanks. Biomedical researchers worldwide need to be able to combine the available resources to improve the power of large-scale studies. A prerequisite for this effort is to be able to search and access phenotypic, clinical and other information about samples that are currently stored at biobanks in an integrated manner. However, privacy issues together with heterogeneous information systems and the lack of agreed-upon vocabularies have made specimen searching across multiple biobanks extremely challenging. We describe three case studies where we have linked samples and sample descriptions in order to facilitate glo…
Whole-genome sequencing for TB source investigations : principles of ethical precision public health
2021
[Background]: Whole-genome sequencing (WGS) of Mycobacterium tuberculosis allows rapid, accurate inferences about the sources, location and timing of transmission. However, in an era of heightened concern for personal privacy and science distrust, such inferences could result in unintended harm and undermine the public's trust.
Acceptability of the e-authentication in higher education studies: views of students with special educational needs and disabilities
2021
AbstractTrust-based e-assessment systems are increasingly important in the digital age for both academic institutions and students, including students with special educational needs and disabilities (SEND). Recent literature indicates a growing number of studies about e-authentication and authorship verification for quality assurance with more flexible modes of assessment. Yet understanding the acceptability of e-authentication systems among SEND students is underexplored. This study examines SEND students’ views about the use of e-authentication systems, including perceived advantages and disadvantages of new technology-enhanced assessment. This study aims to shed light on this area by exa…
Developing E-Authentication for E-Assessment : Diversity of Students Testing the System in Higher Education
2020
Sähköinen tunnistautuminen on yksi keskeisistä teemoista verkko-opetuksessa, -opiskelussa ja - arvioinnissa. Tämän tutkimuksen tarkoituksena oli tutkia opiskeluunsa erityistä tukea tarvitsevien yliopisto-opiskelijoiden käyttökokemuksia kehitteillä olevasta sähköisestä tunnistautumisjärjestelmästä. Erityistä huomiota kehittämistyössä kiinnitettiin tunnistautumisen saavutettavuuteen. Kaikkiaan 15 opiskelijaa testasi TeSLA-projektin osana kehitettyä tunnistautumisjärjestelmää, johon kuului kasvojentunnistus, äänentunnistus, näppäilyntunnistus, tekstityylianalyysi ja plagioinnin tunnistus. Opiskelijat täyttivät esi- ja jälkikyselylomakkeet sekä osallistuivat henkilökohtaisiin haastatteluihin. T…
Online Personal Narratives
2021
The aim of this chapter is to explore personal narratives and conversational stories of self-declared victims of abuse in the comments section of a knowledge-sharing platform, such as YouTube. The aim is to analyze the resemblance between the interaction and exchange of narratives in comments sections, on the one hand, and narrative group psychotherapy and self-help support groups, on the other. While previous research on storytelling mostly addresses professionally guided or produced narratives, this approach extends the production of these narratives to online communicative contexts. Firstly, the chapter looks at the theoretical tenets of storytelling. Secondly, a sociolinguistic, narrato…
Reverse-safe data structures for text indexing
2021
We introduce the notion of reverse-safe data structures. These are data structures that prevent the reconstruction of the data they encode (i.e., they cannot be easily reversed). A data structure D is called z-reverse-safe when there exist at least z datasets with the same set of answers as the ones stored by D. The main challenge is to ensure that D stores as many answers to useful queries as possible, is constructed efficiently, and has size close to the size of the original dataset it encodes. Given a text of length n and an integer z, we propose an algorithm which constructs a z-reverse-safe data structure that has size O(n) and answers pattern matching queries of length at most d optim…
Channel Choice Complications
2019
In spite of massive investment and increased adoption of digital services, citizens continue to use traditional channels to interact with public organizations. The channel choice (CC) field of research tries to understand citizens’ interactions with public authorities to make the interaction more efficient and increase citizen satisfaction. However, most studies have been conducted either as surveys of hypothetical services or in experimental settings, leading to a lack of empirical data from actual use contexts. Therefore, we present the results of a sequential mixed methods study which combines observations of citizen-caseworker interaction in a call center, contextual interviews with cal…
Too good to be true: The effect of conciliatory message design on compromising attitudes in intractable conflicts
2019
The aim of this article is twofold: first, to demonstrate how the use of experimental methods challenges the implicit assumption of progressive discourse analysts that ‘inspiring’ messages will have a positive effect on political attitudes and trust regardless of the recipients’ early political dispositions, and second, to examine the power of conciliatory message design to change political attitudes in favor of a peaceful solution to intractable conflicts such as the Israeli–Palestinian conflict. By employing the conceptual frameworks of progressive discourse analysis and experimental critical discourse analysis, we examined the most comprehensive hypothesis formulated thus far in the lit…