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"information ethics"
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Data Access Committees
Background
Sharing de-identified individual-level health research data is widely promoted and has many potential benefits. However there are also some potential harms, such as misuse of data and breach of participant confidentiality. One way to promote the benefits of sharing while ameliorating its potential harms is through the adoption of a managed access approach where data requests are channeled through a Data Access Committee (DAC), rather than making data openly available without restrictions. A DAC, whether a formal or informal group of individuals, has the responsibility of reviewing and assessing data access requests. Many individual groups, consortiums, institutional and independent DACs have been established but there is currently no widely accepted framework for their organization and function.
Main text
We propose that DACs, should have the role of both promotion of data sharing and protection of data subjects, their communities, data producers, their institutions and the scientific enterprise. We suggest that data access should be granted by DACs as long as the data reuse has potential social value and provided there is low risk of foreseeable harms. To promote data sharing and to motivate data producers, DACs should encourage secondary uses that are consistent with the interests of data producers and their own institutions. Given the suggested roles of DACs, there should be transparent, simple and clear application procedures for data access. The approach to review of applications should be proportionate to the potential risks involved. DACs should be established within institutional and legal frameworks with clear lines of accountability, terms of reference and membership. We suggest that DACs should not be modelled after research ethics committees (RECs) because their functions and goals of review are different from those of RECs. DAC reviews should be guided by the principles of public health ethics instead of research ethics.
Conclusions
In this paper we have suggested a framework under which DACs should operate, how they should be organised, and how to constitute them.
Journal Article
A human rights approach to an international code of conduct for genomic and clinical data sharing
Fostering data sharing is a scientific and ethical imperative. Health gains can be achieved more comprehensively and quickly by combining large, information-rich datasets from across conventionally siloed disciplines and geographic areas. While collaboration for data sharing is increasingly embraced by policymakers and the international biomedical community, we lack a common ethical and legal framework to connect regulators, funders, consortia, and research projects so as to facilitate genomic and clinical data linkage, global science collaboration, and responsible research conduct. Governance tools can be used to responsibly steer the sharing of data for proper stewardship of research discovery, genomics research resources, and their clinical applications. In this article, we propose that an international code of conduct be designed to enable global genomic and clinical data sharing for biomedical research. To give this proposed code universal application and accountability, however, we propose to position it within a human rights framework. This proposition is not without precedent: international treaties have long recognized that everyone has a right to the benefits of scientific progress and its applications, and a right to the protection of the moral and material interests resulting from scientific productions. It is time to apply these twin rights to internationally collaborative genomic and clinical data sharing.
Journal Article
Applied artificial intelligence : a handbook for business leaders
This bestselling book gives business leaders and executives a foundational education on how to leverage artificial intelligence and machine learning solutions to deliver ROI for your business.
Book
Safeguarding Open Science from exploitative practices
Open research and data transparency are a bulwark against unethical activities, but can also introduce integrity risks. As with all public goods, freely available data can be exploited, and here we set out the case for the use of safeguarding practices.
Journal Article
Responsible Governance of Tribal Public Health Data: Data Sharing Ethics and Common Challenges in the US Public Health System
In their viewpoint, Schmit and colleagues thoughtfully discuss tribal public authority, as well as barriers and facilitators to the responsible use of data generated by or collected from members of sovereign American Indian and Alaska Native Nations. Key topics not covered by the authors that warrant discussion include tribal public health workforce development, data systems infrastructure, and federal facilitation of tribal self-governance programs. These additional topics will better contextualize the ethical, legal, and social issues specific to American Indian and Alaska Native public health practice.
Journal Article
Global ethics for the digital age – flourishing ethics
Purpose
The purpose of this paper is to explore an emerging ethical theory for the Digital Age – Flourishing Ethics – which will likely be applicable in many different cultures worldwide, addressing not only human concerns but also activities, decisions and consequences of robots, cyborgs, artificially intelligent agents and other new digital technologies.
Design/methodology/approach
In the past, a number of influential ethical theories in Western philosophy have focused upon choice and autonomy, or pleasure and pain or fairness and justice. These are important ethical concepts, but we consider “flourishing” to be a broader “umbrella concept” under which all of the above ideas can be included, plus additional ethical ideas from cultures in other regions of the world (for example, Buddhist, Muslim, Confucianist cultures and others). Before explaining the applied approach, this study discusses relevant ideas of four example thinkers who emphasize flourishing in their ethics writings: Aristotle, Norbert Wiener, James Moor and Simon Rogerson.
Findings
Flourishing Ethics is not a single ethical theory. It is “an approach,” a “family” of similar ethical theories which can be successfully applied to humans in many different cultures, as well as to non-human agents arising from new digital technologies.
Originality/value
This appears to be the first extended analysis of the emerging flourishing ethics “family” of theories.
Journal Article
Data sharing: Make outbreak research open access
Establish principles for rapid and responsible data sharing in epidemics, urge Nathan L. Yozwiak, Stephen F. Schaffner and Pardis C. Sabeti.
Journal Article
Bibliometric mapping of computer and information ethics
This paper presents the first bibliometric mapping analysis of the field of computer and information ethics (C&IE). It provides a map of the relations between 400 key terms in the field. This term map can be used to get an overview of concepts and topics in the field and to identify relations between information and communication technology concepts on the one hand and ethical concepts on the other hand. To produce the term map, a data set of over thousand articles published in leading journals and conference proceedings in the C&IE field was constructed. With the help of various computer algorithms, key terms were identified in the titles and abstracts of the articles and co-occurrence frequencies of these key terms were calculated. Based on the co-occurrence frequencies, the term map was constructed. This was done using a computer program called VOSviewer. The term map provides a visual representation of the C&IE field and, more specifically, of the organization of the field around three main concepts, namely privacy, ethics, and the Internet.
Journal Article