Dwarna : a blockchain solution for dynamic consent in biobanking

Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna—a web portal for ‘dynamic consent’ that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners’ consent in a blockchain to create an immutable audit trail of research partners’ consent changes. Dwarna’s structure also presents a solution to the European Union’s General Data Protection Regulation’s right to erasure—a right that is seemingly incompatible with the blockchain model. Dwarna’s transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.peer-reviewe

2011 Annual Report - Fair Labor Association

This document is part of a digital collection provided by the Martin P. Catherwood Library, ILR School, Cornell University, pertaining to the effects of globalization on the workplace worldwide. Special emphasis is placed on labor rights, working conditions, labor market changes, and union organizing.FLA_2012_AR_2011.pdf: 421 downloads, before Oct. 1, 2020

Quantum surveillance and 'shared secrets'. A biometric step too far? CEPS Liberty and Security in Europe, July 2010

It is no longer sensible to regard biometrics as having neutral socio-economic, legal and political impacts. Newer generation biometrics are fluid and include behavioural and emotional data that can be combined with other data. Therefore, a range of issues needs to be reviewed in light of the increasing privatisation of ‘security’ that escapes effective, democratic parliamentary and regulatory control and oversight at national, international and EU levels, argues Juliet Lodge, Professor and co-Director of the Jean Monnet European Centre of Excellence at the University of Leeds, U

A cost-benefit analysis of ISO26000 : the standard on social responsibility

The International Organization for Standardization’s ISO 26000 on social responsibility supports organizations of all types and sizes in their responsibilities toward society and the environment. The standard's core subjects respect the rule of law as well as international norms on human rights and non-discrimination. ISO 26000 recommends that organizations ought to follow its principles on accountability, transparency, ethical behaviors and fair operating practices that safeguard organizations and their stakeholders' interests. Hence, this chapter presents a critical analysis on ISO 26000. This is followed by a discussion on the trade-offs between the costs and benefits for those organizations who intend following this social responsibility standard’s principles. Afterwards, this contribution posits that the stated purpose of ISO’s non-certified standard on social responsibility is to provide ‘guidance’ to its users as it is not an enforceable instrument. In conclusion, the author has put forward his implications for practitioners and policy makers. This chapter also suggested some future research avenues to academia.peer-reviewe

Guest Editorial: Ethics and Privacy in Learning Analytics

The European Learning Analytics Community Exchange (LACE) project is responsible for an ongoing series of workshops on ethics and privacy in learning analytics (EP4LA), which have been responsible for driving and transforming activity in these areas. Some of this activity has been brought together with other work in the papers that make up this special issue. These papers cover the creation and development of ethical frameworks, as well as tools and approaches that can be used to address issues of ethics and privacy. This editorial suggests that it is worth taking time to consider the often intertangled issues of ethics, data protection and privacy separately. The challenges mentioned within the special issue are summarised in a table of 22 challenges that are used to identify the values that underpin work in this area. Nine ethical goals are suggested as the editors’ interpretation of the unstated values that lie behind the challenges raised in this paper

Publications ethics

The editor of any medical journal has to be aware of the ethical and legal framework within which medical research is conducted. When research and publications relate to children, then particularly high standards are required in the design, conduct, and reporting of research in order to protect the rights of children and their families. Authors have a number of duties and responsibilities that are mirrored by those of editors and publishers. Of particular importance are the principles of transparency and integrity. Authors should be explicit about who carried out the work and who funded the study. They should declare whether the work has been published before and is not being considered for publication elsewhere. The authors must protect the rights of research participants including their anonymity. Editors and publishers have a duty to ensure high editorial standards and efficient and effective peer review systems. They should follow ethical and responsible publication practices and should safeguard the intellectual property of the authors. This review discusses in detail the duties and responsibilities of authors, editors, and publishers in modern medical publishing

Technofixing the Future: Ethical Side Effects of Using AI and Big Data to meet the SDGs

While the use of smart information systems (the combination of AI and Big Data) offer great potential for meeting many of the UN’s Sustainable Development Goals (SDGs), they also raise a number of ethical challenges in their implementation. Through the use of six empirical case studies, this paper will examine potential ethical issues relating to use of SIS to meet the challenges in six of the SDGs (2, 3, 7, 8, 11, and 12). The paper will show that often a simple “technofix”, such as through the use of SIS, is not sufficient and may exacerbate, or create new, issues for the development community using SIS

Slave to the Algorithm? Why a \u27Right to an Explanation\u27 Is Probably Not the Remedy You Are Looking For

Algorithms, particularly machine learning (ML) algorithms, are increasingly important to individuals’ lives, but have caused a range of concerns revolving mainly around unfairness, discrimination and opacity. Transparency in the form of a “right to an explanation” has emerged as a compellingly attractive remedy since it intuitively promises to open the algorithmic “black box” to promote challenge, redress, and hopefully heightened accountability. Amidst the general furore over algorithmic bias we describe, any remedy in a storm has looked attractive. However, we argue that a right to an explanation in the EU General Data Protection Regulation (GDPR) is unlikely to present a complete remedy to algorithmic harms, particularly in some of the core “algorithmic war stories” that have shaped recent attitudes in this domain. Firstly, the law is restrictive, unclear, or even paradoxical concerning when any explanation-related right can be triggered. Secondly, even navigating this, the legal conception of explanations as “meaningful information about the logic of processing” may not be provided by the kind of ML “explanations” computer scientists have developed, partially in response. ML explanations are restricted both by the type of explanation sought, the dimensionality of the domain and the type of user seeking an explanation. However, “subject-centric explanations (SCEs) focussing on particular regions of a model around a query show promise for interactive exploration, as do explanation systems based on learning a model from outside rather than taking it apart (pedagogical versus decompositional explanations) in dodging developers\u27 worries of intellectual property or trade secrets disclosure. Based on our analysis, we fear that the search for a “right to an explanation” in the GDPR may be at best distracting, and at worst nurture a new kind of “transparency fallacy.” But all is not lost. We argue that other parts of the GDPR related (i) to the right to erasure ( right to be forgotten ) and the right to data portability; and (ii) to privacy by design, Data Protection Impact Assessments and certification and privacy seals, may have the seeds we can use to make algorithms more responsible, explicable, and human-centered