scholarly journals Ethical Issues in Consent for the Reuse of Data in Health Data Platforms

2021 ◽  
Vol 27 (1) ◽  
Author(s):  
Alex McKeown ◽  
Miranda Mourby ◽  
Paul Harrison ◽  
Sophie Walker ◽  
Mark Sheehan ◽  
...  
Keyword(s):  
Social Contract ◽  
Ethical Issues ◽  
Personalised Medicine ◽  
Data Reuse ◽  
Remote Access ◽  
Risk Indicators ◽  
New Paradigm ◽  
The Social ◽  
New Thinking ◽  
The Relationship

AbstractData platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating this. Platform-based approaches thus require new thinking about consent. Here we defend an approach to meeting this challenge within the data platform model, grounded in: the notion of ‘reasonable expectations’ for the reuse of data; Waldron’s account of ‘integrity’ as a heuristic for managing disagreement about the ethical permissibility of the approach; and the element of the social contract that emphasises the importance of public engagement in embedding new norms of research consistent with changing technological realities. While a social contract approach may sound appealing, however, it is incoherent in the context at hand. We defend a way forward guided by that part of the social contract which requires public approval for the proposal and argue that we have moral reasons to endorse a wider presumption of data reuse. However, we show that the relationship in question is not recognisably contractual and that the social contract approach is therefore misleading in this context. We conclude stating four requirements on which the legitimacy of our proposal rests.

scholarly journals Perceptions of ‘Precision’ and ‘Personalised’ Medicine in Singapore and Associated Ethical Issues

2021 ◽  
Vol 13 (2) ◽  
pp. 179-194
Author(s):  
Serene Ong ◽  
Jeffrey Ling ◽  
Angela Ballantyne ◽  
Tamra Lysaght ◽  
Vicki Xafis
Keyword(s):  
Precision Medicine ◽  
Ethical Issues ◽  
Personalised Medicine ◽  
Large Population ◽  
Data Sets ◽  
Visual Aids ◽  
Policy Makers ◽  
The Social ◽  
Genomic Analyses ◽  
Common Understanding

AbstractGovernments are investing in precision medicine (PM) with the aim of improving healthcare through the use of genomic analyses and data analytics to develop tailored treatment approaches for individual patients. The success of PM is contingent upon clear public communications that engender trust and secure the social licence to collect and share large population-wide data sets because specific consent for each data re-use is impractical. Variation in the terminology used by different programmes used to describe PM may hinder clear communication and threaten trust. Language is used to create common understanding and expectations regarding precision medicine between researchers, clinicians and the volunteers. There is a need to better understand public interpretations of PM-related terminology. This paper reports on a qualitative study involving 24 focus group participants in the multi-lingual context of Singapore. The study explored how Singaporeans interpret and understand the terms ‘precision medicine’ and ‘personalised medicine’, and which term they felt more aptly communicates the concept and goals of PM. Results suggest that participants were unable to readily link the terms with this area of medicine and initially displayed preferences for the more familiar term of ‘personalised’. The use of visual aids to convey key concepts resonated with participants, some of whom then indicated preferences for the term ‘precision’ as being a more accurate description of PM research. These aids helped to facilitate dialogue around the ethical and social value, as well as the risks, of PM. Implications for programme developers and policy makers are discussed.

Auditing, Trust, and the Social Contract

2021 ◽  
pp. 112-131
Author(s):  
Bo Rothstein
Keyword(s):  
Empirical Research ◽  
Social Contract ◽  
Quality System ◽  
Representative Democracy ◽  
High Quality ◽  
Empirical Results ◽  
The Social ◽  
The Relationship

The relationship between trust and auditing can be described as a paradox. In the social contract that forms the basis of modern societies, extensive trust issues arise. How can citizens trust that what is promised in the contract will also be provided? Elections should work to put politicians who do not deliver according to the social contract to be voted out of their position. Empirical research shows that this often does not work, hence the need for an auditing body. Empirical results have shown that national auditing institutions work towards reducing corruption and other forms of malfeasance, and are thereby vital to creating a working social contract. A high-quality system for auditing also has a much stronger effect on reducing corruption than is the case for democracy. Auditing turns out to be an undervalued instrument that not only complements but in some ways proves even more effective than representative democracy.

Reciprocity in Morality and Law

2013 ◽  
Vol 6 (2) ◽  
pp. 201-227 ◽  
Author(s):  
Ronit Donyets Kedar
Keyword(s):  
Social Contract ◽  
Moral Philosophy ◽  
Moral Theory ◽  
Cooperative Scheme ◽  
The Social ◽  
Mutual Advantage ◽  
The Relationship ◽  
Modern Moral Philosophy ◽  
Liberal Thought

Abstract Western liberal thought, which is rooted in the social contract tradition, views the relationship between rational contractors as fundamental to the authority of law, politics, and morality. Within this liberal discourse, dominant strands of modern moral philosophy claim that morality too is best understood in contractual terms. Accordingly, others are perceived first and foremost as autonomous, free, and equal parties to a reciprocal cooperative scheme, designed for mutual advantage. This Article aims to challenge the contractual model as an appropriate framework for morality. My claim is that the constituting concepts of contractualist thought, especially the idea of reciprocity, while perhaps fitting to law, are misplaced in morality. I argue that importing the concept of reciprocity and its conceptual habitat from law to morality yields ethical contractualism an unconvincing moral theory.

The Employment Contract as Materialization of Social Order. Contracts at Albert Ranft’s Stockholm theatres, 1895-1926

2017 ◽  
Vol 29 (1) ◽  
pp. 81
Author(s):  
Lovisa Näslund
Keyword(s):  
Social Contract ◽  
Social Order ◽  
Employment Contracts ◽  
Dominant Position ◽  
Employment Contract ◽  
The Social ◽  
Theatre Studies ◽  
The One ◽  
The Relationship ◽  
Formal Contract

In the archive, the materialized traces of theatrical organization and performances remain. In this paper, we focus on the employment contract, as a type of source material commonly found but rarely studied in theatre studies. Empirically, the paper is based on a study of contracts from Albert Ranft’s Stockholm theatres, 1895-1926. Ranft built his commercially funded theatrical empire in Stockholm in a period when the competition from subsidized theatre was minimal, and for a time dominated the Stockholm theatres. The study demonstrates how the study of employment contracts allows us to form an understanding of power relations between managers on the one hand, and artists and directors on the other, and also the formal and social aspects of the employment contracts. In the case of Albert Ranft, the contracts bear evidence of his dominant position in Stockholm theatre, which in turn a orded him an unusually powerful position in relation to his employees. The relationship between the formal and social contract is explored, and it is suggested that the formal contract could be seen as a photographic negative of the social contract: if there is an extensive social contract, the formal contract will be more elaborate, and vice versa. The extensive formal contracts of the studied period might therefore be seen as evidence of a relatively thin social contract, implying that industry norms were, at the time, not institutionalized enough to be taken for granted.

Narrative Fictions on State-Terrorism and Trauma: Re-reading Helon Habila’s Waiting for an Angel and John Nkemngong Nkengasong’s Across the Mongolo

2019 ◽  
Vol 7 (2) ◽  
pp. 140-166
Author(s):  
Eric Nsuh Zuhmboshi
Keyword(s):  
Social Contract ◽  
The State ◽  
Fundamental Rights ◽  
Post Colonial ◽  
Mongo Beti ◽  
State Terrorism ◽  
The Social ◽  
Political Agitation ◽  
African Writers ◽  
The Relationship

Abstract The relationship that exists between the state and her citizens has been described by Jean Jacques Rousseau as “a social contract.” In this contractual agreement, citizens are bound to respect state authority while the state, in turn, has the bounden duty to protect her citizens and guide them in their aspirations. In fact, any state that does not perform this duty is guilty of violating the fundamental rights of her citizens. This, however, is not the case in most postcolonial societies where the citizens see the state as an aggressive apparatus against their wellbeing because the state is not fulfilling its own part of the social contract, which requires them to protect the citizens and guide them in their aspirations. This unfortunate situation has laid the foundation for protest and anti-establishment writings in post-colonial societies – especially in Africa. Since literature, as a semiotic resource, is coterminous with its socio-political context, this attitude of the state has drawn inimical criticism from key postcolonial African writers such as Chinua Achebe, Wole Soyinka, Ngugi wa Thiong’o, Mongo Beti, and Nadine Gordimer. Using Helon Habila’s Waiting for an Angel and John Nkemngong Nkengasong’s Across the Mongolo, this essay shows the relationship between state-terrorism and the traumatic conditions of the citizens in contemporary Africa. From the perspective of trauma theory, the essay defends the premise that the postcolonial subjects/characters, in the novels under study, are traumatized and depressed because of their continuous victimization by the state. Due to this state-imposed terror and hardship, the citizens are forced to indulge in political agitation, radicalism and violence in response to their destitute and impoverished conditions.

JUSTICE AND IDENTITY

2014 ◽  
Vol 30 (1) ◽  
pp. 1-10 ◽  
Author(s):  
Amartya Sen
Keyword(s):  
Social Contract ◽  
Common Ground ◽  
Multiple Identities ◽  
The Social ◽  
Group Identities ◽  
Single Identity ◽  
Religion And Race ◽  
The Relationship

This paper discusses the relationship between justice and identity. While it is widely agreed that justice requires us to go beyond loyalty to our simplest identity – being just oneself – there is less common ground on how far we must go beyond self-centredness. How relevant are group identities to the requirements of justice, or must we transcend those too? The author draws attention to the trap of confinement to nationality and citizenship in determining the requirements of justice, particularly under the social-contract approach, and also to the danger of exclusive concentration on some other identity such as religion and race. He concludes that it is critically important to pay attention to every human being's multiple identities related to the different groups to which a person belongs; the priorities have to be chosen by reason, rather than any single identity being imposed on a person on grounds of some extrinsic precedence. Justice is closely linked with the pursuit of impartiality, but that pursuit has to be open rather than closed, resisting closure through nationality or ethnicity or any other allegedly all-conquering single identity. Christian List

In the Shadow of the General Will: Rawls, Kant and Rousseau on the Problem of Political Right

1987 ◽  
Vol 49 (3) ◽  
pp. 389-409 ◽  
Author(s):  
Patrick Neal
Keyword(s):  
Social Contract ◽  
General Will ◽  
The Social ◽  
Political Right ◽  
The Relationship ◽  
Unstable Position ◽  
Theoretical Project

The relationship between Kant and Rawls is apparently an obvious one; Rawls himself acknowledges the Kantian foundations of his approach to questions of justice and political right, and identifies the precise points at which his theory departs from that of Kant. This essay attempts to show that when one examines those points of departure carefully, they turn out to point not merely away from Kant, but directly and inexorably toward the account of political right given by Rousseau in The Social Contract. The essay argues that it is impossible to fully understand Rawls' theoretical project until one sees the (unstable) position it occupies between the Kantian and Rousseauian accounts of political right. Moreover, it argues that the theoretical project undertaken by Rawls, that of revising the Kantian conception of autonomy in an attempt to show how it could be coherently “expressed” politically, was actually undertaken and “completed” by Rousseau — though with ironic, and unsettling, results.

scholarly journals Od demokracji bezpośredniej do rządów zgromadzenia? Rousseau i problemy republikańskiego konstytucjonalizmu

2018 ◽  
Vol 69 (1) ◽  
pp. 193-210
Author(s):  
Rafał Lis
Keyword(s):  
Social Contract ◽  
Direct Democracy ◽  
Popular Sovereignty ◽  
Public Authorities ◽  
The Public ◽  
The Social ◽  
Emergency Measure ◽  
The Government ◽  
Direct Government ◽  
The Relationship

The following article considers the problems connected with the relationship between the principles of the direct democracy and the gouvernement d’assemblée. The values contemporarily ascribed to these principles are often counted among different, sometimes even opposing, traditions of republican constitutionalism. However, the proposed analysis of Rousseau’s thought suggests that the general intellectual tendencies that are attributedto both systems might originally have had a lot in common. Furthermore, they embody the two different republican ways of implementing the very ideas of popular sovereignty and the accountability of the public authorities to the citizens. The undertaken juxtaposition of the contents of the Social Contract and of the Considerations on the Government of Poland may even point to an evolution of Rousseau’s stance. It can be discerned especiallyin the approval in the second work, which pertained to one of the largest European states of that time, as it conveys the need to shift the responsibility for law-making to the assembly of deputies (the Sejm). The proposition of transferring this responsibility to a quasi-representative body corresponds perfectly with the warnings against the abuses of an unchecked executive, which are equally stringent in the Social Contract. This actuallydenoted that Rousseau was ready to accept some sort of gouvernement d’assemblée in large states. In the end however, it did not mark a departure from the ideals of the direct government, especially after taking into consideration Rousseau’s extraordinary appreciation of the institutions of deputy directives and – treated already as an emergency measure – confederation.

scholarly journals Rousseau e o espetáculo do paradoxo

2020 ◽  
Author(s):  
Mauro Sérgio Santos Da Silva ◽  
Marcio Danelon
Keyword(s):  
Political Theory ◽  
Social Contract ◽  
Critical Reception ◽  
Or Education ◽  
The Social ◽  
Politics And Education ◽  
Keywords Education ◽  
The Relationship ◽  
E Mail ◽  
The Way

*Doutorando em Educação pela Universidade Federal de Uberlândia (UFU). E-mail: [email protected]. * Doutor em Filosofia da Educação pela Universidade Estadual de Campinas (UNICAMP) e professor da Universidade Federal de Uberlândia (UFU).  E-mail: [email protected]. Rousseau e o espetáculo do paradoxo Resumo: O presente estudo discute a relação entre política e educação na obra de Jean-Jacques Rousseau a partir de autores que constituem a recepção crítica da obra do filósofo. A propósito, apresenta elementos da vida e da obra do autor genebrino. Expõe eixos fundamentais da ideia de contratualismo ou jusnaturalismo. Discorre acerca das teses de Rousseau atinentes à confluência entre Do Contrato Social (reflexão política) e o Emílio ou da Educação (reflexão educacional). Exibe a ideia de paradoxo da liberdade presente na teoria política de Rousseau. Aponta para os desdobramentos deste paradoxo na reflexão educacional do autor, especialmente nos dois primeiros livros do Emílio, pelo princípio de educação negativa. Palavras-chave: Educação. Liberdade. Paradoxo. Política. Rousseau. Rousseau and the paradox of the spectacle Abstract: The present study discusses the relationship between politics and education in the Jean-Jacques Rousseau’work from authors who constitute the critical reception of this philosopher's work. By the way, show elements of the life and work of the Genevan author. It exposes fundamental axes of the idea of contractualism or jusnaturalism. It discusses Rousseau's theses concerning the confluence between The Social Contract (political reflection) and Emílio or Education (educational reflection). It shows the idea of the paradox of freedom present in Rousseau's political theory. It points to the unfolding of this paradox in the educational reflection of this author, especially in the first two books of the Emílio, by the  negative education’principle. Keywords: Education. Freedom. Paradox. Politics. Rousseau.

Property

2017 ◽  
Author(s):  
Marco Barducci
Keyword(s):  
Property Rights ◽  
Social Contract ◽  
Private Property ◽  
The Political ◽  
Individual Rights ◽  
Law Of War ◽  
Political Implications ◽  
The Social ◽  
The Commons ◽  
The Relationship

Chapter 6 will focus primarily on the political implications of Grotius’ theory of ‘limited’ property as they concerned the relationship between the sphere of individual rights, the social contract, and the prerogatives of civil power. From the debate on the abolition of tithes in the early 1640s to the controversy between Filmer and Locke in the 1680s, the debates on property rights revolved around how much individuals could impropriate from the commons stock and, accordingly, on the limits and prerogatives of civil power in regulating private property. Grotius’ theory of property, along with his analysis of the law of war, were also components of Dutch and English expansion overseas.

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