Deliberative assessment of surrogate consent in dementia research

Background Research involving incapacitated persons with dementia entails complex scientific, legal, and ethical issues, making traditional surveys of layperson views on the ethics of such research challenging. We therefore assessed the impact of democratic deliberation (DD), involving balanced, detailed education and peer deliberation, on the views of those responsible for persons with dementia. Methods One hundred and seventy-eight community-recruited caregivers or primary decision-makers for persons with dementia were randomly assigned to either an all-day DD session group or a control group. Educational materials used for the DD session were vetted for balance and accuracy by an interdisciplinary advisory panel. We assessed the acceptability of family-surrogate consent for dementia research (“surrogate-based research”) from a societal policy perspective as well as from the more personal perspectives of deciding for a loved one or for oneself (surrogate and self-perspectives), assessed at baseline, immediately post-DD session, and 1 month after DD date, for four research scenarios of varying risk-benefit profiles. Results At baseline, a majority in both the DD and control groups supported a policy of family consent for dementia research in all research scenarios. The support for a policy of family consent for surrogate-based research increased in the DD group, but not in the control group. The change in the DD group was maintained 1 month later. In the DD group, there were transient changes in attitudes from surrogate or self-perspectives. In the control group, there were no changes from baseline in attitude toward surrogate consent from any perspective. Conclusions Intensive, balanced, and accurate education, along with peer deliberation provided by democratic deliberation, led to a sustained increase in support for a societal policy of family consent in dementia research among those responsible for dementia patients.

Deliberation and journalism

The first chapter in 'International Journalism and Democracy' re-examines current ideas about the role of journalism in promoting democracy, introducing the concept of "deliberative journalism". 'Deliberation and Journalism' lists the ways in which journalists can assist deliberation and politics in communities around the world. The chapter defines deliberation as a specific form of conversation that precedes and promotes decision-making and action by members of a community. The author recognises the difficulty of engaging in deliberation in communities that are divided by different interests, identities, backgrounds, resources and needs. She provides examples of strategies that journalists can use to encourage inclusive and productive deliberation in the face of community diversity. The chapter introduces examples of types of deliberative journalism that have emerged around the globe. These include strategies that have been sometimes been labeled as public journalism, civic journalism, peace journalism, development journalism, citizen journalism, the street press, community journalism, environmental journalism, and social entrepreneurism. The chapter also includes models of journalism that have not yet been given any particular name. Although the book identifies problems surrounding the theory and practice of these forms of journalism, the author notes that this is to be expected. Most models of deliberative journalism are relatively new, with none being more than a few decades old. The author concludes that resolution of these problems will only occur incrementally.

Law autonomy and advance directives

The principle of autonomy underpins legal regulation of advance directives that refuse life-sustaining medical treatment. The primacy of autonomy in this domain is recognised expressly in the case law, through judicial pronouncement, and implicitly in most Australian jurisdictions, through enactment into statute of the right to make an advance directive. This article seeks to justify autonomy as an appropriate principle for regulating advance directives and relies on three arguments: the necessity of autonomy in a liberal democracy; the primacy of autonomy in medical ethics discourse; and the uncontested importance of autonomy in the law on contemporaneous refusal of medical treatment. This article also responds to key criticisms that autonomy is not an appropriate organising principle to underpin legal regulation of advance directives.

G4C2C : enabling citizen engagement at arms' length from government

The recognition that Web 2.0 applications and social media sites will strengthen and improve interaction between governments and citizens has resulted in a global push into new e-democracy or Government 2.0 spaces. These typically follow government-to-citizen (g2c) or citizen-to-citizen (c2c) models, but both these approaches are problematic: g2c is often concerned more with service delivery to citizens as clients, or exists to make a show of ‘listening to the public’ rather than to genuinely source citizen ideas for government policy, while c2c often takes place without direct government participation and therefore cannot ensure that the outcomes of citizen deliberations are accepted into the government policy-making process. Building on recent examples of Australian Government 2.0 initiatives, we suggest a new approach based on government support for citizen-to-citizen engagement, or g4c2c, as a workable compromise, and suggest that public service broadcasters should play a key role in facilitating this model of citizen engagement.

American public journalism versus other international media models

Chapter 2 of 'International Journalism and Democracy' provides examples of what the author dubs "deliberative journalism". Following a definition of deliberative journalism in Chapter 1, the book's second chapter examines major models of deliberative journalism that are in operation around the world. These models include public journalism, citizen journalism, community and alternative media, development journalism and peace journalism. The author argues that when these new forms of journalism are practiced well, they extend people's ability to identify, express, understand and respond to politics and issues affecting their communities. However, the main models of deliberative journalism all have contentious elements. Many deliberative journalism practioners have been subjected to criticism for lack of objectivity and poor professional standards. Many of their activities have clearly been ill-conceived. The author also finds that neither professional nor citizen journalists have a strong understanding of what constitutes "good practice" in deliberative journalism. Furthermore, there is much debate as to whether the type of "citizen journalism" that is posted intermittently on Facebook, Twitter, blogs and other social media can even be defined as "journalism". The practice of deliberative journalism can potentially contribute to public deliberation, but it does not always do so in any immediate or obvious way. The author finds that even so, deliberative journalism indirectly strengthens the environments that support fertile deliberation and decision making. (See the Extended Abstract for further details.)

Citizen consultation from above and below : the Australian perspective

Citizen engagement and e‐government initiatives in Australia remain somewhat underdeveloped, not least for a number of fundamental structural reasons. Fledgling initiatives can be divided into a number of broad categories, including top‐down government consultation through blogs and similar experimental online sites operated by government departments; bottom‐up NGO‐driven watchdog initiatives such as GetUp!’s Project Democracy site, modelled on projects established in the UK; and a variety of more or less successful attempts by politicians (and their media handlers) to utilise social networking tools to connect with constituents while bypassing the mainstream media. This chapter explores these initiatives, and discusses the varying levels of success which they have found to date.

民主理论和理论上的物理

本文章辩论，在 Simmelian (齐美尔联) 的线之间，民主理论即可能产生实际和普遍理论, 像类似理论物理学的发展。这篇文章背后的推理是要表明，”基层民主“的理论比较于爱因斯坦的狭义相对论可能是实在- 特别关于对称，统一，简单和实用的参数。 这些参数不仅适应当前的知识, 也是作为物理理论的成分之一, 但也产生对测试（应用程序）的路径。一旦“基本的民主“的理论满足这些参数，它可以解决民主定义的争论。首先, 将讨论“基层民主“的理论是什么及为什么它不同于以往的作品;第二，通过解释选择的参数（如为什么这些，而不是其他的证实或天窗理论）;第三，通过比较狭义相对论及”基层民主“理论如何符合这些参数。

La théorie démocratique et La Physique Théorique

Le présent essai soutient, un peu le long d'une ligne simmelienne, que la théorie démocratique peut produire des théories pratiques et universelles, comme celles développées en physique théorique. Le raisonnement qui sous-tend cet essai est de montrer que la théorie de la «démocratie de base" peut-être vrai par le faite si on la comparer à la Relative Spécifique d’Einstein portant spécifiquement sur les paramètres de symétrie, l'unification, la simplicité et l'utilité. Ces paramètres sont ce qui fait qu’une théorie en physique comme ont la rencontre s’adapte non seulement aux connaissances actuelles, mais aussi de produire des chemins vers l'essai (application). Comme la théorie de la «démocratie de base » peut satisfaire ces mêmes paramètres, il pourrait trancher le débat relatif à la définition de la démocratie. Ceci sera d'abord soutenu pour discuter de ce qui est la théorie de la «démocratie de base» et pourquoi cela diffère des travaux précédents, en deuxième lieu, en expliquant les paramètres choisis (comme pour quoi ceux-ci et pas à d'autres confirment ou échouent les théories) et, troisièmement, en comparant comment la relativité et la théorie de la «démocratie de base » peut correspondre aux paramètres.

الديمقراطية ونظرية الفيزياء النظرية

هذا المقال قٌول، إلى حد ما على طول خط س مٌال أن نظر ةٌ الد مٌقراط ةٌ قد تنتج النظر اٌت العمل ةٌ والعالم ةٌ ، مثل تلك الت وضعت ف الف زٌ اٌء النظر ةٌ. الأسباب الكامنة وراء هذا المقال هو لاظهار ان نظر ةٌ "الد مٌقراط ةٌ الأساس ةٌ " قد كٌون صح حٌا عن طر قٌ مقارنتها بنظر ةٌ النسب ةٌ الخاصة بآ نٌشتا نٌ ، ف مٌا تٌعلق على وجه التحد دٌ بمعا رٌ التماثل والتوح دٌ، والبساطة ، والمرافق العامة. هذه المعا رٌٌ ه الت تجعل نظر ةٌ ف الف زٌ اٌء واجتماعههم عل هٌا لا صٌلح إلا مع المعرفة الحال ةٌ، ولكن أ ضٌا إنتاج نحو مسارات الاختبار )التطب قٌ(. وكما مٌكن ان تتطابق نظر ةٌ "الد مٌقراط ةٌ الأساس ةٌ " بهذه المعا رٌٌ نفسها، و مٌكن أن حٌسم الجدل الدابر بشؤن تعر ؾٌ الد مٌقراط ةٌ. و مٌكن القول من خلبل مناقشة ماه ةٌ نظر ةٌ "الد مٌقراط ةٌ الأساس ةٌ " اولا وك ؾٌ ان السبب ف ذلك خٌتلؾ عن الأعمال السابقة، وثان اٌ، من خلبل شرح المعا رٌ الاخت اٌر ةٌ )كما ف لماذا هذه ول سٌ ؼ رٌها تؤكد أو تحبط النظر اٌت(، وثالثا، بمقارنة ك ؾٌ مٌكن للنسب ةٌ الخاصة والنظر ةٌ "الد مٌقراط ةٌ الأساس ةٌ " ان تتطابق مع المعا رٌٌ.

Constitutional legitimacy : an international ill and gap in the literature?

The central argument of this work is that “democratic constitutional legitimacy”[2] probably does not currently exist in the politics of any country internationally. This inherent problem in constitutionalism is an endemic governance problem most citizenries should be dealing with, only that we are not in a large extent doing so and haven’t been historically. This position was ascertained using a form of Beck and Grande’s (2010) cosmopolitan methodology in my doctoral thesis (which we shall return to). It is argued that every constitution is in need of considerable rethinking so as to bring its statutes in line with the interests of the plurality of individuals it oversees. Finally, this work attempts to show that research in this area of democratic constitutional legitimacy is lacking in the literature as only a few scholars presently engage the issue (namely Simone Chambers).

The experience of xenophobia in South Africa

In May 2008, xenophobic violence erupted in South Africa. The targets were individuals who had migrated from the north in search of asylum. Emerging first in township communities around Johannesburg, the aggression spread to other provinces. Sixty-two people died, and 100,000 (20,000 in the Western Cape alone) were displaced. As the attacks escalated across the country, thousands of migrants searched for refuge in police stations and churches. Chilling stories spread about mobs armed with axes, metal bars, and clubs. The mobs stormed from shack to shack, assaulted migrants, locked them in their homes, and set the homes on fire. The public reaction was one of shock and horror. The Los Angeles Times declared, “Migrants Burned Alive in S. Africa.” The South African president at the time, Thabo Mbeki, called for an end to “shameful and criminal attacks.” Commentators were stunned by the signs of hatred of foreigners (xenophobia) that emerged in the young South African democracy. The tragedy of the violence in South Africa was magnified by the fact that many of the victims had fled from violence and persecution in their countries of origin. Amid genocidal violations of human rights that had recently occurred in some countries in sub- Saharan Africa, the new South Africa stood as a beacon of democracy and respect for human dignity. With this openness in mind, many immigrants to South Africa sought safety and refuge from the conflicts in their homelands. More than 43,500 refugees and 227,000 asylum seekers now live in South Africa. The majority of people accorded refugee status came from Burundi, Democratic Republic of Congo, and Somalia. South Africa also hosts thousands of other migrants who remain undocumented.

A review of rationale for allocating costs and payments in producing and supplying public sector information PART A of 2 Parts – Chapters 1, 2 and 3) 13 March 2011 version

This work reviews the rationale and processes for raising revenue and allocating funds to perform information intensive activities that are pertinent to the work of democratic government. ‘Government of the people, by the people, for the people’ expresses an idea that democratic government has no higher authority than the people who agree to be bound by its rules. Democracy depends on continually learning how to develop understandings and agreements that can sustain voting majorities on which democratic law making and collective action depends. The objective expressed in constitutional terms is to deliver ‘peace, order and good government’. Meeting this objective requires a collective intellectual authority that can understand what is possible; and a collective moral authority to understand what ought to happen in practice. Facts of life determine that a society needs to retain its collective competence despite a continual turnover of its membership as people die but life goes on. Retaining this ‘collective competence’ in matters of self-government depends on each new generation: • acquiring a collective knowledge of how to produce goods and services needed to sustain a society and its capacity for self-government; • Learning how to defend society diplomatically and militarily in relation to external forces to prevent overthrow of its self-governing capacity; and • Learning how to defend society against divisive internal forces to preserve the authority of representative legislatures, allow peaceful dispute resolution and maintain social cohesion.

Minority activism : trends informing political participation across Australian communities

In the late 1990’s, intense and vigorous debate surrounded the impact of minority communities on Australia’s mainstream society. The rise of far-right populism took the stage with the introduction to the political landscape of Pauline Hanson and her One Nation party, whilst John Howard’s Liberal-National Coalition Government took the fore on debate over immigration issues corresponding with an influx of irregular arrivals. In 2001, following the September 11 terrorist attacks in the United States of America and subsequent attacks on western targets globally, many of these issues continued to be debated through the security posturing that followed. In recent years, much effort has been afforded to countering the threat of terrorism from home grown assailants. The Government has introduced stringent legislative responses whilst researchers have studied social movements and trends within Australian communities, particularly with respect to minorities. In 2008, the Scanlon Foundation, in association with Monash University and various government entities, released its findings into its survey approach to mapping social cohesion in Australia. It identified a number of spheres of exploration which it believed were essential to measuring cohesiveness of Australian communities generally including, economic, political and socio-cultural factors (Markus and Dharmalingam, 2008). This doctoral project report will explore the political sphere as identified in the Mapping Social Cohesion project and apply it to identified minority ethnic communities. The Scanlon Foundation project identified political participation as one of a number of true indicators of social cohesion. This project acknowledges that democracy in Australia is represented predominantly by two political entities representing a vast majority of constituents under a compulsory voting regime. This essay will identify the levels of political activism achieved by minority ethnic communities and access to democratic participation within the Australian political structure. It will define a ten year period from 1999 to 2009, identifying trends and issues within minority communities that have proactively and reactively promoted engagement in achieving a political voice, framed within a mainstream-dominated political system. It will research social movements and other influential factors over that period to enrich existing knowledge in relation to political participation rates across Australian communities.

Gaddafi and Libya : a case for just intervention?

Full militaristic intervention cannot be justified on the grounds that this is a ‘just war’. We are then left with the option to intervene militarily in a smaller way or not to intervene militarily at all.