Studies on Understanding Individual Willingness to Disclose Genetic Information to Public and Private Stakeholders

While technologies for genetic sequencing have increased the promise of personalized medicine, they simultaneously pose threats to personal privacy. The public’s desire to protect itself from unauthorized access to information may limit the uses of this valuable resource. To date, there is limited understanding about the public’s attitudes toward the regulation and sharing of such information. We sought to understand the drivers of individuals’ decisions to disclose genetic information to a third party in a setting where disclosure potentially creates both private and social benefits, but also carries the risk of potential misuse of private information. We conducted two separate but related studies. First, we administered surveys to college students and parents, to determine individual attitudes toward and inter-generational influences on the disclosure decision. Second, we conducted a game-theory based experiment that assessed how participants’ decisions to disclose genetic information are influenced by societal and health factors. Key survey findings indicate that concerns about genetic information privacy negatively impact the likelihood of disclosure while the perceived benefits of disclosure and trust in the institution receiving the information have a positive influence. The experiment results also show that the risk of discrimination negatively affects the likelihood of disclosure, while the positive impact that disclosure has on the probability of finding a cure and the presence of a monetary incentive to disclose, increase the likelihood. We also study the determinants of individuals’ decision to be informed of findings about their health, and how information about health status is used for financial decisions.

Social tourism today: Stakeholders, and supply and demand factors

As highlighted in the previous chapter, the definitions and consequently the expression of social tourism have developed and changed since its inception in the 19th century. In post-modern times there has been a significant evolution of the needs, the expectations and the possibilities (or opportunities) for holidaymaking and travel in general for the majority of people in Europe. Socio-political, economic and technological developments have forged a new context for tourism and created new travel opportunities (see Chapter 6). While the numbers of tourism trips have grown steadily over time, tourism participation levels in Europe have largely stabilised: there are still a number of groups in contemporary society who are excluded from tourism. Social tourism has adapted to societal changes and has changed its focus from factory workers and manual labourers towards the current main four target groups.

Social impacts of a temperate fisheries closure: understanding stakeholders' views

The social dimensions of marine protected areas (MPAs) play an important role in MPA success, yet these social dimensions are little understood. We explore the social impacts arising from the establishment of an MPA using Lyme Bay (south west England) as a case study. Through a series of small group semi-structured interviews the social impacts experienced by fishermen (mobile and static gear), recreational users (divers and sea anglers) and recreation service providers (charter boat and dive businesses) were explored. The social impacts expressed varied according to activity in which the stakeholder group engaged. Negative themes included lengthening fishing trips, tension and conflict, fishermen identity, equity and uncertainty in the long-term. Positive themes included improved experiences for both commercial fishermen and recreational users, and expectations for long-term benefits. These impacts need to be understood because they influence stakeholder behaviour. Failure to interpret stakeholder responses may lead to poor decision-making and worsening stakeholder relations. These findings have implications for the success of the MPA in Lyme Bay, but also for the future network of marine conservation zones around the UK. Any assessment of MPA impacts must therefore identify social as well as economic and environmental change.

Understandings of citizenship education in Northern Ireland and the Republic of Ireland: Public discourses among stakeholders in the public and private sectors

Internationally, citizenship education has come to the fore in the past decade. It may be particularly importantwithin the context of societies with a legacy of political conflict, such as Northern Ireland and the Republic of Ireland, where it is being implemented as part of the statutory curriculum. This article explores understandingsof citizenship education among stakeholders in the private and public sectors in Northern Ireland and the Republic of Ireland with the aim to compare these with curricular conceptualizations of citizenship inboth contexts. Semi-structured interviews were conducted in both societies involving non-governmentalorganizations, political parties, trade unions and the police. Results indicated that levels of awareness aboutcitizenship education varied substantially and understandings mainly reflected current theory and curriculumpractice in citizenship. Commonalities emerged as in both societies similar key concepts were identified whiledifferences transpired over issues relating to national identity and political conflict, which may raise questionsfor history and citizenship education in both societies.

Stakeholders and perspectivism in qualitative policy evaluation: A realist reflection

This paper examines the epistemological bases for the inclusion of stakeholders in policy research. While it concedes that the input of stakeholders provides essential expert and experiential knowledge for the understanding of complex policies and programmes, it contends that the approach which assumes that all interpretations of policy including those of stakeholders should be afforded equal validity, which we term relativist perspectivism, undermines the possibility of robust research by allowing power to replace methodological rigour as the primary research dynamic. It is noted that this problem tends to be more acute when the research is qualitative. A study into the gendered effects of Common Agricultural Policy reforms is used as an illustrative example of how research can be compromised by relativist perspectivism. It is argued that realist research methodologies uniquely provide the capacity to maintain epistemological robustness, while also being able to take due account of the perspectives of stakeholders.

The evolution of the UK charity Statement of Recommended Practice: The influence of key stakeholders

In the early 1980s, a landmark study identified significant poor reporting practice in UK charities. As a consequence, a journey was commenced with the aim of improving accounting and reporting as a basis for enhancing accountability by charities. Much of this change has been effected through the publication of evolving Statements of Recommended Practice (SORPs) on accounting and reporting by charities. This paper analyses the evolution of the SORP through time using insights from stakeholder theory, and argues that the key stakeholders influencing the evolving SORP have been government and the accounting profession.

‘Stakeholders’ views of legal and advice services for people admitted to psychiatric hospital’

This paper describes a study that used a mixed method approach to elicit the views of a range of stakeholders about experiences of compulsory admission to psychiatric hospital, and the use of the Mental Health Review Tribunal (MHRT). The paper begins with an introduction to the background of the study, one that took place in Northern Ireland, a region in the UK with its own mental health legislation and policy. A review of literature is then presented. This highlights some of the disadvantages that service users and carers face when dealing with professionals during and following compulsory admission to hospital. This section concludes with an overview of literature on the MHRT in the UK. A range of methods was used to gather data from the following stakeholders: five service user and carer focus group interviews (n = 44); interviews with four lawyers experienced in Tribunal work; an interview with a legal member of the Tribunal; a survey of solicitors who identified themselves as equipped to carry out Tribunal work; interviews with three managers of organisations that provided patient advocacy services; letters to hospital managers requesting information provided to patients and carers. The findings reveal a number of themes associated with these experiences of compulsory admission to hospital and subsequent use of the Tribunal. Service users and carers generally found it difficult to access relevant information about rights, information provided by hospital managers was uneven and lawyers were often not familiar with processes associated with compulsory admission. There was a range of views about the Tribunal. Most respondents felt that the Tribunal was necessary and mostly satisfactory in the way it carried out its functions, but stakeholders raised a number of issues. Carers in particular felt that they should be more involved in decision-making processes, whereas lawyers tended to be focused on more technical, legal issues. Problems of regrading prior to the Tribunal and in examining medical evidence were highlighted by lawyers. There was an appeal for better information and advice by service users and carers, and recognition of the need for better training and education for lawyers. The paper concludes with a brief discussion about current mental health law in the UK, arguing that, in this context, professionals should more proactively use information and advice that can enable service users and carers to defend their rights. Keywords: compulsory mental health; law; legal and advice services

Conversion Ratios, Efficiency and Obfuscation: A Study of the Impact of Changed UK Charity Accounting Requirements on External Stakeholders

Key stakeholders in the UK charity sector have, in recent years, advocated greater accountability for charity performance. Part of that debate has focussed on the use of conversion ratios as indicators of efficiency, with importance to stakeholders being contrasted with charities’ apparent reluctance to report such measures. Whilst, before 2005, conversion ratios could have been computed from financial statements, changes in the UK charity SORP have radically altered the ability of users to do this. This article explores the impact on the visibility of such information through an analysis of the financial statements of large UK charities before and after the 2005 changes. Overall, the findings suggest that, despite the stated intention of increasing transparency in respect of charity costs, the application of the changes has resulted in charities ‘managing’ the numbers and limiting their disclosures, possibly to the detriment of external stakeholders.