scholarly journals Public trust and genomic medicine in Canada and the UK

2021 ◽  
Vol 6 ◽  
pp. 124
Author(s):  
Sarah Savić-Kallesøe ◽  
Anna Middleton ◽  
Richard Milne
Keyword(s):  
Genomic Medicine ◽  
Public Trust ◽  
Future Research ◽  
Non Profit ◽  
Logistic Regression Models ◽  
Medicine Research ◽  
Social Actors ◽  
The Public ◽  
Willingness To Donate ◽  
The Uk

Background: Genomic medicine could improve precise risk stratification, early prevention, and personalised treatment across a broad spectrum of disease. As this reality approaches, questions on the importance of public trust arise. The success of genomic medicine initiatives is influenced by the public’s trust and willingness to engage. Specific social actors influential in the public's trust have been identified by the “Your DNA, Your Say” study, including doctors, researchers, and governments. This paper aims to identify and examine which specific social actors, if any, in Canada and the United Kingdom (UK) are the most trustworthy and influential to engage the public in genomic medicine research. Methods: Using data from the ‘Your DNA, Your Say’ study, logistic regression models and Pearson’s chi-square tests were conducted to explore trust in social actors across Canada and the UK. Results: The results demonstrate Canada and the UK significantly differ in public trust and willingness to donate. Non-profit researchers, domestic doctors, and personal doctors were identified to be the most influential and trustworthy social actors in Canada and the UK. Conclusions: The comparative results indicate that both countries would benefit from engaging the public through doctors and non-profit researchers. The UK could additionally support public trust by engaging with the public through the National Health Service. However, the results suggest that whilst public trust is significant, it may be neither necessary nor sufficient in influencing willingness to donate. Future research could do well to investigate how the importance of public trust compares in countries with lower public trust.

scholarly journals Public trust and genomic medicine in Canada and the UK

2021 ◽  
Vol 6 ◽  
pp. 124
Author(s):  
Sarah Savić-Kallesøe ◽  
Anna Middleton ◽  
Richard Milne
Keyword(s):  
Genomic Medicine ◽  
Public Trust ◽  
Future Research ◽  
Chi Square ◽  
Non Profit ◽  
Logistic Regression Models ◽  
Social Actors ◽  
The Public ◽  
Willingness To Donate ◽  
The Uk

Background: Genomic medicine could improve precise risk stratification, early prevention, and personalised treatment across a broad spectrum of disease. As this reality approaches, questions on the importance of public trust arise. The success of genomic medicine initiatives is influenced by the public’s trust and willingness to engage. Specific social actors influential in the public's trust have been identified by the “Your DNA, Your Say” study, including doctors, researchers, and governments. This paper aims to identify and examine which specific social actors, if any, in Canada and the United Kingdom (UK) are the most trustworthy and influential to engage the public in genomic medicine. Methods: Using data from the ‘Your DNA, Your Say’ study, logistic regression models and Pearson’s chi-square tests were conducted to explore trust in social actors across Canada and the UK. Results: The results demonstrate Canada and the UK significantly differ in public trust and willingness to donate. Non-profit researchers, domestic doctors, and personal doctors were identified to be the most influential and trustworthy social actors in Canada and the UK. Conclusions: The comparative results indicate that both countries would benefit from engaging the public through doctors and non-profit researchers. The UK could additionally support public trust by engaging with the public through the National Health Service. However, the results suggest that whilst public trust is significant, it may be neither necessary nor sufficient in influencing willingness to donate. Future research could do well to investigate how the importance of public trust compares in countries with lower public trust.

scholarly journals Economic cost of congenital CMV in the UK

2018 ◽  
Vol 104 (6) ◽  
pp. 559-563 ◽  
Author(s):  
Jenny Retzler ◽  
Nick Hex ◽  
Chris Bartlett ◽  
Anne Webb ◽  
Sharon Wood ◽  
...  
Keyword(s):  
Public Sector ◽  
Vaccine Development ◽  
Cost Model ◽  
Financial Burden ◽  
Secondary Data ◽  
Economic Cost ◽  
Future Research ◽  
The Public ◽  
The Uk

ObjectiveCongenital cytomegalovirus (cCMV) is the most common infectious cause of congenital disability. It can disrupt neurodevelopment, causing lifelong impairments including sensorineural hearing loss and developmental delay. This study aimed, for the first time, to estimate the annual economic burden of managing cCMV and its sequelae in the UK.DesignThe study collated available secondary data to develop a static cost model.SettingThe model aimed to estimate costs of cCMV in the UK for the year 2016.PatientsIndividuals of all ages with cCMV.Main outcome measuresDirect (incurred by the public sector) and indirect (incurred personally or by society) costs associated with management of cCMV and its sequelae.ResultsThe model estimated that the total cost of cCMV to the UK in 2016 was £732 million (lower and upper estimates were between £495 and £942 million). Approximately 40% of the costs were directly incurred by the public sector, with the remaining 60% being indirect costs, including lost productivity. Long-term impairments caused by the virus had a higher financial burden than the acute management of cCMV.ConclusionsThe cost of cCMV is substantial, predominantly stemming from long-term impairments. Costs should be compared against investment in educational strategies and vaccine development programmes that aim to prevent virus transmission, as well as the value of introducing universal screening for cCMV to both increase detection of children who would benefit from treatment, and to build a more robust evidence base for future research.

scholarly journals Confronting the digital mob: Press coverage of online justice seeking

2020 ◽  
Vol 35 (6) ◽  
pp. 597-612
Author(s):  
Daniel Trottier
Keyword(s):  
Social Media ◽  
Press Coverage ◽  
Social Actors ◽  
The Public ◽  
News Reports ◽  
The Press ◽  
Social Media Platforms ◽  
The Uk

This article offers an exploratory account of press coverage of digitally mediated vigilantism. It considers how the UK press renders these events visible in a sustained and meaningful way. News reports and editorials add visibility to these events, and also make them more tangible when integrating content from social media platforms. In doing so, this coverage directs attention to a range of social actors, who may be perceived as responsible for these kinds of developments. In considering how other social actors are presented in relation to digital vigilantism, this study focusses on press accounts of those either initiating or being targeted by online denunciations, and also on a broader and often amorphous range of spectators to such events, often referred to as ‘internet mobs’. Relatedly, this article explores how specific practices related to digital vigilantism such as denunciation are expressed in press coverage, as well as coverage of motivations by the public to either participate or facilitate such practices. Reflecting on how the press represent mediated denunciation will illustrate not only how tabloids and broadsheets frame such practices, but also how they take advantage of connective and data-generating affordances associated with social platforms.

scholarly journals Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

2019 ◽  
Vol 28 (4) ◽  
pp. 424-434 ◽  
Author(s):  
Anna Middleton ◽  
◽  
Richard Milne ◽  
Heidi Howard ◽  
Emilia Niemiec ◽  
...  
Keyword(s):  
Personal Experience ◽  
Medical Information ◽  
Personal Data ◽  
Genomic Data ◽  
Future Research ◽  
Clinical Value ◽  
The Public ◽  
The Usa ◽  
The Uk ◽  
Scientific Value

AbstractPublic acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation of DNA and health data. Fifty-two percent of this public held ‘exceptionalist’ views about genetics (i.e., believed DNA is different or ‘special’ compared to other types of medical information). This group was more likely to be familiar with or have had personal experience with genomics and to perceive DNA information as having personal as well as clinical and scientific value. Those with personal experience with genetics and genetic exceptionalist views were nearly six times more likely to be willing to donate their anonymous DNA and medical information for research than other respondents. Perceived harms from re-identification did not appear to dissuade publics from being willing to participate in research. The interplay between exceptionalist views about genetics and the personal, scientific and clinical value attributed to data would be a valuable focus for future research.

Accountability, Responsibility, and Public Trust in Non-Profit Institutions

2019 ◽  
pp. 215-238
Author(s):  
Renato Civitillo
Keyword(s):  
Public Administration ◽  
Public Trust ◽  
Social Value ◽  
Non Profit ◽  
The Public ◽  
Goods And Services ◽  
Economic Actor

This chapter assumes that there is a gap between the request for non-profit sector managerialism and the need to ensure that it continues to represent the economic actor (probably the only one, in this sense) able to ensure the provision of goods and services of high social value for citizens and communities. In this perspective, we should abandon the idea that the non-profit sector can be a mere tool to “fill” the residual spaces left by the two “giants”: the market and the public administration. In this sense, the main aim of the research is to identify a possible link between accountability, responsibility, public trust, and communication in NPIs, possibly through a potential multidimensional managerial model in which these conceptual elements can be represented in a coordinated and systemic way.

Co-Operation between the Public Administration and Non-Profit Organisations as a Condition of the Development of Public Entrepreneurship

2017 ◽  
pp. 253-275
Author(s):  
Angelika Wodecka-Hyjek
Keyword(s):  
Civil Society ◽  
Public Sector ◽  
Public Administration ◽  
Public Services ◽  
Non Profit ◽  
The Public ◽  
Social Dialogue ◽  
Public Entrepreneurship ◽  
The Uk

The chapter presents the models of co-operation between the public administration and non-profit organisations with regard to performing public services, supporting civil initiatives, building social dialogue and shaping civil society in the context of the development of public entrepreneurship. The issues presented at the beginning related to the separation of entrepreneurship in the public sector; emphasis was put on the need for co-operation between the public sector and non-profit organisations as a condition of the development of public entrepreneurship. Then the models of co-operation of the public sector and non-profit organisations in the UK, Canada, Estonia and Poland were characterised. In consequence of the conducted discourse, postulates and recommendations were presented with regard to building efficient and effective co-operation between the public administration and the sector of non-profit organisations and its role in the development of public entrepreneurship.

A qualitative analysis of intellectual capital in social service non-profit organisations: A theory–practice divide

2010 ◽  
Vol 16 (5) ◽  
pp. 656-676 ◽  
Author(s):  
Eric Kong ◽  
Gaby Ramia
Keyword(s):  
Intellectual Capital ◽  
Social Service ◽  
Public Management ◽  
Research Direction ◽  
Future Research ◽  
Future Research Direction ◽  
Non Profit ◽  
The Public ◽  
The Social ◽  
Depth Interviews

AbstractThe paper contributes to debates on non-profit strategy, first by arguing that intellectual capital (IC) can be utilised as a non-profit strategic management conceptual framework and second by highlighting nuances in the meaning and significance of IC. In responding to the public management agendas of government, non-profit organisations (NPOs) have had to commercialise their strategies. On the basis of data from in-depth interviews with 35 senior non-profit managers across 22 large Australian social service non-profit organisations (SSNPOs), the analysis confirms that IC assists SSNPOs in managing the social–commercial divide, but that managers' understandings of the IC concept are often different to those contained in the IC literature. IC scholars suggest that IC is synergetic with its components being inter-dependent. The managers perceived that very few inter-relationships existed between IC components. Implications of the theory—practice divide for non-profit strategy are discussed. Research limitations and future research direction are presented in the paper.

scholarly journals Refugee Organizations’ Public Communication: Conceptualizing and Exploring New Avenues for an Underdeveloped Research Subject

2019 ◽  
Vol 7 (2) ◽  
pp. 195-206 ◽  
Author(s):  
David Ongenaert
Keyword(s):  
Public Perception ◽  
Public Communication ◽  
Future Research ◽  
Research Subject ◽  
Non Profit ◽  
The Public ◽  
Research Perspectives ◽  
Interdisciplinary Approaches ◽  
The Social ◽  
The Subject

The world has faced a major increase in forced displacement and the theme has also become the subject of many public, media and political debates. The public communication of refugee organizations thereby increasingly impacts their operations, the public perception on forcibly displaced people and societal and policy beliefs and actions. However, little research has been conducted on the topic. Therefore, this conceptual article aims to (1) define refugee organizations’ public communication, (2) situate it within broader research fields, and (3) motivate the latter’s relevance as research perspectives. In order to be able to achieve these research objectives, the article first discusses the social and scientific relevance of the research subject and identifies important gaps within literature which both form an essential scientific base for developing the main arguments. Adopting a historical perspective, the article demonstrates that in recent decades the social and scientific relevance of research on strategic and non-profit communication in general and on refugee organizations’ public communication in particular have increased. Nevertheless, these fields remain underdeveloped and are mostly text-focused, while the production and reception dimensions are barely explored. Remarkably, however, little or no research has been conducted from an organizational communication perspective, although this article demonstrates that the subject can be adequately embedded in and examined from the fields of strategic, non-profit and public communication. Finally, the article highlights the relevance of the holistic Communicative Constitution of Organizations perspective and argues that future research can benefit by adopting multi-perspective, practice-oriented, multi-methodological, comparative and/or interdisciplinary approaches.

Awards as non-monetary incentives

2016 ◽  
Vol 4 (1) ◽  
pp. 81-91 ◽  
Author(s):  
Bruno S. Frey ◽  
Jana Gallus
Keyword(s):  
Voluntary Sector ◽  
Future Research ◽  
Volunteer Management ◽  
Monetary Incentives ◽  
Content Type ◽  
Non Profit ◽  
The Public ◽  
For Profit ◽  
Cultural Sector ◽  
Survey Approach

Purpose – The purpose of this paper is to shed light on a widely used yet scarcely investigated form of incentive, awards. The paper seeks to explore, first, whether awards can be used to motivate higher performance in academia and volunteering, and second, how often and in what forms awards are in actual fact being used in the voluntary sector. Design/methodology/approach – The paper combines a theoretical analysis with various analytical methods, including a new matching technique, randomization in the field, and the survey approach. Findings – Awards have the potential to substantially increase performance, yet they are less frequently used in the Swiss voluntary sector than theory suggests. Research limitations/implications – The focus lies on awards in academia and the voluntary sector. Future research should investigate awards in other fields, e.g. the for-profit or the cultural sector. It should also assess their use in other countries to facilitate cross-country comparisons. The effects on non-recipients and the public at large are another area worth investigating. Practical implications – Practitioners are encouraged to consider awards as an important motivational instrument, which could be integrated more explicitly and more widely in the volunteer management systems of Swiss non-profit organizations. Originality/value – This contribution analyzes a widely used yet scarcely investigated form of incentive, awards. originality/value derives naturally from this observation.

scholarly journals Dealing with UK Museum Collections: Law, Ethics and the Public/Private Divide

2015 ◽  
Vol 22 (2-3) ◽  
pp. 177-204 ◽  
Author(s):  
Janet Ulph
Keyword(s):  
Public Perception ◽  
Public Trust ◽  
Law Reform ◽  
Museum Collections ◽  
The Public ◽  
Cultural Object ◽  
Public Nature ◽  
Ethical Guidance ◽  
The Uk

Abstract:In the UK, there is a public perception that, if a cultural object is given to a museum, it will remain in its collections forever. But does UK law reflect this? This article analyses UK law and discusses whether a commercial approach is not always well suited to serve the needs of the museum sector and whether there should be more thought given to the public nature of museums. It calls for law reform in order to ensure that UK law and ethical guidance relating to deaccessioning and disposals from collections is sufficient to maintain public trust, so that people continue to visit museums and to offer objects for their collections.

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