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Book part
Publication date: 30 June 2017

Leslie P. Francis and John G. Francis

Reusing existing data sets of health information for public health or medical research has much to recommend it. Much data repurposing in medical or public health research or…

Abstract

Reusing existing data sets of health information for public health or medical research has much to recommend it. Much data repurposing in medical or public health research or practice involves information that has been stripped of individual identifiers but some does not. In some cases, there may have been consent to the reuse but in other cases consent may be absent and people may be entirely unaware of how the data about them are being used. Data sets are also being combined and may contain information with very different sources, consent histories, and individual identifiers. Much of the ethical and policy discussion about the permissibility of data reuse has centered on two questions: for identifiable data, the scope of the original consent and whether the reuse is permissible in light of that scope, and for de-identified data, whether there are unacceptable risks that the data will be reidentified in a manner that is harmful to any data subjects. Prioritizing these questions rests on a picture of the ethics of data use as primarily about respecting the choices of the data subject. We contend that this picture is mistaken; data repurposing, especially when data sets are combined, raises novel questions about the impacts of research on groups and their implications for individuals regarded as falling within these groups. These impacts suggest that the controversies about de-identification or reconsent for reuse are to some extent beside the point. Serious ethical questions are also raised by the inferences that may be drawn about individuals from the research and resulting risks of stigmatization. These risks may arise even when individuals were not part of the original data set being repurposed. Data reuse, repurposing, and recombination may have damaging effects on others not included within the original data sets. These issues of justice for individuals who might be regarded as indirect subjects of research are not even raised by approaches that consider only the implications for or agreement of the original data subject. This chapter argues that health information should be available for reuse, information should be available for use, but in a way that does not yield unexpected surprises, produce direct harm to individuals, or violate warranted trust.

Details

Studies in Law, Politics, and Society
Type: Book
ISBN: 978-1-78714-811-6

Keywords

Book part
Publication date: 2 May 2006

Joan Stenson

This paper presents the major findings of recently completed research in the UK concerning the attributes of information as an asset and its impact on organisational performance…

Abstract

This paper presents the major findings of recently completed research in the UK concerning the attributes of information as an asset and its impact on organisational performance. The research study employed an automated information asset- and attribute-scoring grid exercise and semi-structured open-ended interviews with 45 senior UK managers in four case study organisations. The information asset-scoring grid was developed to provide a simple visual representation of information assets and attributes using Excel charts. The semi-structured open-ended interviews aimed to identify the attributes of information assets considered significant by 45 senior UK managers and to explore relevant issues such as the value of information and organisational effectiveness.

Details

Advances in Library Administration and Organization
Type: Book
ISBN: 978-1-84950-403-4

Content available
Book part
Publication date: 1 December 2023

Margie Foster, Hossein Arvand, Hugh T. Graham and Denise Bedford

Abstract

Details

Knowledge Preservation and Curation
Type: Book
ISBN: 978-1-83982-930-7

Book part
Publication date: 8 July 2013

Barbara B. Tillett

To raise consciousness among librarians and library directors about the need to structure our descriptive data for library resources in a way that is machine-actionable in the…

Abstract

Purpose

To raise consciousness among librarians and library directors about the need to structure our descriptive data for library resources in a way that is machine-actionable in the Semantic Web, not just the library silos of MARC-based systems.

Design/methodology/approach

Narrative overview.

Social implications

By assuring library metadata is in a well-formed structure, libraries can place access to their collections on the Web where their users are.

Findings

The new cataloging code, Resource Description and Access (RDA), is one step in the direction toward more interoperability in the Semantic Web.

Originality/value

New perspective on this issue is to urge librarians to work with systems people and vendors for next generation systems that build on the relationships and identifying characteristics of well-formed metadata arising from use of the RDA.

Details

New Directions in Information Organization
Type: Book
ISBN: 978-1-78190-559-3

Book part
Publication date: 28 August 2020

Anna-Mari Simunaniemi, Riitta Forsten-Astikainen, Kai Hänninen and Matti Muhos

This case study describes practices in a micro-entrepreneur peer-to-peer network (MicroENTRE network), an example of a community of practice (CoP) where entrepreneurs, researchers…

Abstract

This case study describes practices in a micro-entrepreneur peer-to-peer network (MicroENTRE network), an example of a community of practice (CoP) where entrepreneurs, researchers and local public business advisory services (PBAS) seek to promote entrepreneurial behaviour through joint activities, such as sharing ideas, peer learning and business development. The concept was originally established to address the practical needs of micro-entrepreneurs and business development agencies in sparsely populated areas (SPA). Through the network, micro-entrepreneurs and PBAS are provided with direct contact to the university research team, which transfers recent research-based knowledge to the network. This chapter bridges the literature on micro-entrepreneurship and entrepreneurial behaviour in networks through an empirical description of micro-entrepreneurs’ activities in the context of a peer-to-peer network using the typical CoP activity classifications developed by Wenger as the framework. The case study is based on the longitudinal analysis of monthly meetings (from 2015 to 2019) of 13 micro-entrepreneur groups. The data consist of participatory observations during the network meetings and the audio recordings and meeting memos of the authors. The findings describe typical examples of CoP activities in the network. For example, entrepreneurs use the network to share ideas, make requests for advice based on experience of fellow entrepreneurs and reuse the assets of other network members. Moreover, the data show that regular, peer-to-peer network meetings, jointly facilitated by PBAS and researchers, are an acceptable and accessible platform for micro-enterprise development in SPA.

Details

The Entrepreneurial Behaviour: Unveiling the cognitive and emotional aspect of entrepreneurship
Type: Book
ISBN: 978-1-78973-508-6

Keywords

Book part
Publication date: 14 December 2017

Fotis Kitsios and Maria Kamariotou

Research focuses on factors that affect nascent entrepreneurs’ decision to create a start-up but research in the field of open data contests has not been investigated yet. So…

Abstract

Research focuses on factors that affect nascent entrepreneurs’ decision to create a start-up but research in the field of open data contests has not been investigated yet. So, there are no conclusions about the enhancement of entrepreneurship through the hosting of contests. This chapter aims to examine the factors that affect the decision of establishing a start-up by developers who have participated in open data contests. Interviews were conducted with developers who participated in hackathons and they aimed to launch their apps and establish start-ups. The obstacles were the limited support, marketing activities, and the lack of free data.

Details

Global Opportunities for Entrepreneurial Growth: Coopetition and Knowledge Dynamics within and across Firms
Type: Book
ISBN: 978-1-78714-502-3

Keywords

Book part
Publication date: 8 January 2021

Jo Williams

The silos of library cataloging data have long been recognized as barriers to the seamless discovery of library resources via the Web and to the interaction of library data with…

Abstract

The silos of library cataloging data have long been recognized as barriers to the seamless discovery of library resources via the Web and to the interaction of library data with Web data and other uses. In order to better serve users, library cataloging data must be available in a more open environment, and libraries are looking to linked data to present library resources in the data stream of the Web in a way that is seamless to users. This entails changing cataloging formats and tools to Web standards. While there is a lot of discussion and activity around linked data, this chapter approaches the highly technological topic in a way that is geared more toward a general and practical cataloging perspective.

Details

Technical Services in the 21st Century
Type: Book
ISBN: 978-1-80043-829-3

Keywords

Content available

Abstract

Details

Looking for Information
Type: Book
ISBN: 978-1-80382-424-6

Abstract

Details

Evaluating Scholarship and Research Impact
Type: Book
ISBN: 978-1-78756-390-2

Abstract

Details

The Online Healthcare Community
Type: Book
ISBN: 978-1-83549-141-6

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