Relevant bibliographies by topics / Transparency and Consent Framework

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Academic literature on the topic 'Transparency and Consent Framework'

Author: Grafiati
Published: 28 June 2021
Last updated: 9 February 2022

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Journal articles on the topic "Transparency and Consent Framework"

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Campbell, Kenneth, and Kayhan Parsi. "A New Age of Patient Transparency: An Organizational Framework for Informed Consent." Journal of Law, Medicine & Ethics 45, no. 1 (2017): 60–65. http://dx.doi.org/10.1177/1073110517703100.

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With the many changes occurring in today's healthcare organizations, patients are increasingly equipped with a vast quantity of health care data and being more included in the healthcare decision-making process. The new approach we propose incorporates a new patient-organization framework that examines relevant historical, legal and ethical elements within the doctrine of informed consent in addition to examining the role of new healthcare organizations' obligations to include data to support addressing issues such as population health, health outcomes and health disparities within the informed consent. There is a growing consensus among healthcare professionals that using an evidencebased organizational informed consent framework to improve the informed consent process can lead to better comprehension, health outcomes, transparency and improved patient trust and retention overall.
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Velmovitsky, Pedro Elkind, Pedro Augusto Da Silva E. Souza Miranda, Hélène Vaillancourt, Tania Donovska, Jennifer Teague, and Plinio Pelegrini Morita. "A Blockchain-Based Consent Platform for Active Assisted Living: Modeling Study and Conceptual Framework." Journal of Medical Internet Research 22, no. 12 (December 4, 2020): e20832. http://dx.doi.org/10.2196/20832.

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Background Recent advancements in active assisted living (AAL) technologies allow older adults to age well in place. However, sensing technologies increase the complexity of data collection points, making it difficult for users to consent to data collection. One possible solution for improving transparency in the consent management process is the use of blockchain, an immutable and timestamped ledger. Objective This study aims to provide a conceptual framework based on technology aimed at mitigating trust issues in the consent management process. Methods The consent management process was modeled using established methodologies to obtain a mapping of trust issues. This mapping was then used to develop a conceptual framework based on previous monitoring and surveillance architectures for connected devices. Results In this paper, we present a model that maps trust issues in the informed consent process; a conceptual framework capable of providing all the necessary underlining technologies, components, and functionalities required to develop applications capable of managing the process of informed consent for AAL, powered by blockchain technology to ensure transparency; and a diagram showing an instantiation of the framework with entities comprising the participants in the blockchain network, suggesting possible technologies that can be used. Conclusions Our conceptual framework provides all the components and technologies that are required to enhance the informed consent process. Blockchain technology can help overcome several privacy challenges and mitigate trust issues that are currently present in the consent management process of data collection involving AAL technologies.
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Jeng, Wei, Shih-Hung Wang, Hung-Wei Chen, Po-Wei Huang, Yu-Jen Chen, and Hsu-Chun Hsiao. "A decentralized framework for cultivating research lifecycle transparency." PLOS ONE 15, no. 11 (November 18, 2020): e0241496. http://dx.doi.org/10.1371/journal.pone.0241496.

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Research transparency has been advocated as a key means of addressing the current crisis of reproducibility. This article proposes an enhanced form of research transparency, termed lifecycle transparency. Over the entire lifecycle of a research effort, this approach captures the syntactical contexts of artifacts and stakeholders, such as timestamps, agreements, and/or dependency requirements for completing each research phase. For example, such contexts might include when, where, and from whom patients’ consent and institutional review board approvals were received before a clinical trial was carried out. However, as existing open-science tools are often dedicated to certain research phases or disciplines, and thus insufficient to support lifecycle transparency, we propose a novel decentralized framework to serve as a common medium for interaction among open-science tools, and produces irrefutable and immutable proofs of progress that can be verified automatically.
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Lawrence, Colleen E., Leah Dunkel, Mark McEver, Tiffany Israel, Robert Taylor, Germán Chiriboga, Karin Valentine Goins, et al. "A REDCap-based model for electronic consent (eConsent): Moving toward a more personalized consent." Journal of Clinical and Translational Science 4, no. 4 (April 3, 2020): 345–53. http://dx.doi.org/10.1017/cts.2020.30.

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AbstractIntroduction:The updated common rule, for human subjects research, requires that consents “begin with a ‘concise and focused’ presentation of the key information that will most likely help someone make a decision about whether to participate in a study” (Menikoff, Kaneshiro, Pritchard. The New England Journal of Medicine. 2017; 376(7): 613–615.). We utilized a community-engaged technology development approach to inform feature options within the REDCap software platform centered around collection and storage of electronic consent (eConsent) to address issues of transparency, clinical trial efficiency, and regulatory compliance for informed consent (Harris, et al. Journal of Biomedical Informatics 2009; 42(2): 377–381.). eConsent may also improve recruitment and retention in clinical research studies by addressing: (1) barriers for accessing rural populations by facilitating remote consent and (2) cultural and literacy barriers by including optional explanatory material (e.g., defining terms by hovering over them with the cursor) or the choice of displaying different videos/images based on participant’s race, ethnicity, or educational level (Phillippi, et al. Journal of Obstetric, Gynecologic, & Neonatal Nursing. 2018; 47(4): 529–534.).Methods:We developed and pilot tested our eConsent framework to provide a personalized consent experience whereby users are guided through a consent document that utilizes avatars, contextual glossary information supplements, and videos, to facilitate communication of information.Results:The eConsent framework includes a portfolio of eight features, reviewed by community stakeholders, and tested at two academic medical centers.Conclusions:Early adoption and utilization of this eConsent framework have demonstrated acceptability. Next steps will emphasize testing efficacy of features to improve participant engagement with the consent process.
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George, Dalton R., Todd Kuiken, and Jason A. Delborne. "Articulating ‘free, prior and informed consent’ (FPIC) for engineered gene drives." Proceedings of the Royal Society B: Biological Sciences 286, no. 1917 (December 18, 2019): 20191484. http://dx.doi.org/10.1098/rspb.2019.1484.

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Recent statements by United Nations bodies point to free, prior and informed consent (FPIC) as a potential requirement in the development of engineered gene drive applications. As a concept developed in the context of protecting Indigenous rights to self-determination in land development scenarios, FPIC would need to be extended to apply to the context of ecological editing. Without an explicit framework of application, FPIC could be interpreted as a narrowly framed process of community consultation focused on the social implications of technology, and award little formal or advisory power in decision-making to Indigenous peoples and local communities. In this paper, we argue for an articulation of FPIC that attends to issues of transparency, iterative community-scale consent, and shared power through co-development among Indigenous peoples, local communities, researchers and technology developers. In realizing a comprehensive FPIC process, researchers and developers have an opportunity to incorporate enhanced participation and social guidance mechanisms into the design, development and implementation of engineered gene drive applications.
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Wiedemann, Klaus. "Data Protection and Competition Law Enforcement in the Digital Economy: Why a Coherent and Consistent Approach is Necessary." IIC - International Review of Intellectual Property and Competition Law 52, no. 7 (August 2021): 915–33. http://dx.doi.org/10.1007/s40319-021-01090-6.

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AbstractThis contribution argues that a coherent and consistent interpretation of data protection and competition law is both possible and adequate. To illustrate this need, the ongoing abuse-of-dominance investigation by the French Autorité de la Concurrence against Apple is analysed. Representatives of the online advertising industry lodged a complaint against the introduction of Apple’s “App Tracking Transparency framework”. The latter includes a de facto obstacle to third-party tracking which shuts down advertisers’ access to those precious personal data that can be used for online advertising. With the Apple case in mind and by way of example, this paper argues that the regulation of consent to the processing of personal data under the GDPR serves as a dogmatic link between data protection and competition law, as this legal basis is at the heart of many digital business models. The GDPR provides a normative framework to determine when consent has been “freely given”. This can be a fruitful starting point for a competitive assessment, too, as both legal regimes pursue the objective of protecting consumer autonomy and consumer choice. The paper finishes by finding that its dogmatic approach corresponds to recent developments within competition law legislation and enforcement.
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Hils, Maximilian, Daniel W. Woods, and Rainer Böhme. "Privacy Preference Signals: Past, Present and Future." Proceedings on Privacy Enhancing Technologies 2021, no. 4 (July 23, 2021): 249–69. http://dx.doi.org/10.2478/popets-2021-0069.

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Abstract Privacy preference signals are digital representations of how users want their personal data to be processed. Such signals must be adopted by both the sender (users) and intended recipients (data processors). Adoption represents a coordination problem that remains unsolved despite efforts dating back to the 1990s. Browsers implemented standards like the Platform for Privacy Preferences (P3P) and Do Not Track (DNT), but vendors profiting from personal data faced few incentives to receive and respect the expressed wishes of data subjects. In the wake of recent privacy laws, a coalition of AdTech firms published the Transparency and Consent Framework (TCF), which defines an optin consent signal. This paper integrates post-GDPR developments into the wider history of privacy preference signals. Our main contribution is a high-frequency longitudinal study describing how TCF signal gained dominance as of February 2021. We explore which factors correlate with adoption at the website level. Both the number of third parties on a website and the presence of Google Ads are associated with higher adoption of TCF. Further, we show that vendors acted as early adopters of TCF 2.0 and provide two case-studies describing how Consent Management Providers shifted existing customers to TCF 2.0. We sketch ways forward for a pro-privacy signal.
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Carrigan, Coleen, Madison W. Green, and Abibat Rahman-Davies. "“The revolution will not be supervised”: Consent and open secrets in data science." Big Data & Society 8, no. 2 (July 2021): 205395172110356. http://dx.doi.org/10.1177/20539517211035673.

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The social impacts of computer technology are often glorified in public discourse, but there is growing concern about its actual effects on society. In this article, we ask: how does “consent” as an analytical framework make visible the social dynamics and power relations in the capture, extraction, and labor of data science knowledge production? We hypothesize that a form of boundary violation in data science workplaces—gender harassment—may correlate with the ways humans’ lived experiences are extracted to produce Big Data. The concept of consent offers a useful way to draw comparisons between gender relations in data science and the means by which machines are trained to learn and reason. Inspired by how Big Tech leaders describe unsupervised machine learning, and the co-optation of “revolutionary” rhetoric they use to do so, we introduce a concept we call “techniques of invisibility.” Techniques of invisibility are the ways in which an extreme imbalance between exposure and opacity, demarcated along fault lines of power, are fabricated and maintained, closing down the possibility for bidirectional transparency in the production and applications of algorithms. Further, techniques of invisibility, which we group into two categories—epistemic injustice and the Brotherhood—include acts of subjection by powerful actors in data science designed to quell resistance to exploitative relations. These techniques may be useful in making further connections between epistemic violence, sexism, and surveillance, sussing out persistent boundary violations in data science to render the social in data science visible, and open to scrutiny and debate.
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Cosgrove, Lisa, and Emily E. Wheeler. "Drug Firms, the Codification of Diagnostic Categories, and Bias in Clinical Guidelines." Journal of Law, Medicine & Ethics 41, no. 3 (2013): 644–53. http://dx.doi.org/10.1111/jlme.12074.

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The profession of medicine is predicated upon an ethical mandate: first do no harm. However, critics charge that the medical profession’s culture and its public health mission are being undermined by the pharmaceutical industry’s wide-ranging influence. In this article, we analyze how drug firms influence psychiatric taxonomy and treatment guidelines such that these resources may serve commercial rather than public health interests. Moving beyond a conflict-ofinterest model, we use the conceptual and normative framework of institutional corruption to examine how organized psychiatry’s dependence on drug firms has distorted science. We suggest that academic-industry relationships have led to the corruption of the evidence base upon which accurate diagnosis and sound treatment depend. We describe the current dependency corruption and argue that transparency alone is not a solution — and sometimes even produces iatrogenic effects. Furthermore, we argue that the corruption of the evidence base for diagnostic and practice guidelines renders obsolete the traditional informed consent process, and we offer suggestions for reforming this process.
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Bateman-House, Alison, Arthur Caplan, and Lisa Kearns. "Ensuring Justice in Access to Investigational Neurological Drugs." Seminars in Neurology 38, no. 05 (October 2018): 583–88. http://dx.doi.org/10.1055/s-0038-1668076.

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AbstractPatients who suffer from life-threatening illnesses or are stricken with conditions that could result in serious morbidity who have exhausted all appropriate treatments may choose to try, through the Food and Drug Administration's expanded access program, an investigational drug or device in development. The program has succeeded for decades in allowing patients to access potentially helpful but still experimental agents. Nevertheless, the administration of investigational drugs outside of clinical trials raises several ethical issues. Of particular concern are the validity of informed consent and the absence of a framework to ensure that experimental drugs are allocated justly and transparently. Although there are some safeguards to help protect the soundness of consent, little work to date has been done to guarantee that investigational medical products are allocated justly and transparently. We introduce a novel pilot project that seeks to address this issue.
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Dissertations / Theses on the topic "Transparency and Consent Framework"

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Postulka, Aleš. "Zobrazení a úprava informací v Transparency and Consent Framework." Master's thesis, Vysoké učení technické v Brně. Fakulta informačních technologií, 2021. http://www.nusl.cz/ntk/nusl-445505.

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This thesis deals with the development of multilingual for web browsers Mozilla Firefox and Google Chrome. The purpose of the extension is to enable the automated management of provided consents to the processing of personal data on websites using the Transparency and Consent Framework. Extension was developed on the basis of knowledge about this framework and about legal norms GDPR and ePrivacy Directive, which deal with the protection of personal data. Knowledge of the method of developing extensions for web browsers using WebExtensions was also used during the implementation. During testing, consent was successfully enforced in 96,2 % of tested websites in Mozilla Firefox. In Google Chrome, success has been achieved in 82,1 % of tested websites. The banner requiring consent was not displayed in 33 % of websites in Mozilla Firefox and in 31,1 % of websites in Google Chrome.
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Kirrane, Sabrina, Garcia Javier David Fernandez, Wouter Dullaert, Uros Milosevic, Axel Polleres, Piero A. Bonatti, Rigo Wenning, Olha Drozd, and Philip Raschke. "A Scalable Consent, Transparency and Compliance Architecture." Springer International Publishing, 2018. http://epub.wu.ac.at/6483/1/ESWC2018.pdf.

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In this demo we present the SPECIAL consent, transparency and compliance system. The objective of the system is to afford data subjects more control over personal data processing and sharing, while at the same time enabling data controllers and processors to comply with consent and transparency obligations mandated by the European General Data Protection Regulation. A short promotional video can be found at https://purl.com/specialprivacy/demos/ESWC2018.
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Karegar, Farzaneh. "Towards Improving Transparency, Intervenability, and Consent in HCI." Licentiate thesis, Karlstads universitet, Institutionen för matematik och datavetenskap (from 2013), 2018. http://urn.kb.se/resolve?urn=urn:nbn:se:kau:diva-66109.

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Transparency of personal data processing is enforced by most Western privacy laws, including the new General Data Protection Regulation (GDPR) which will be effective from May 2018. The GDPR specifies that personal data shall be processed lawfully, fairly, and in a transparent manner. It strengthens people's rights for both ex-ante and ex-post transparency and intervenability. Equally important is the strict legal requirements for informed consent established by the GDPR. On the other hand, the legal privacy principles have Human-Computer Interaction (HCI) implications. People should comprehend the principles, be aware of when the principles may be used, and be able to use them. Transparent information about personal data processing should be concise, intelligible, and provided in an easily accessible form, pursuant to the GDPR. Nonetheless, the answer to the question about how HCI implications can be addressed depends on the attempts to decrease the gap between legal and user-centric transparency, intervenability, and consent. Enhancing individuals' control in a usable way helps people to be aware of the flow of their personal information, control their data, make informed decisions, and finally preserve their privacy. The objective of this thesis is to propose usable tools and solutions, to enhance people's control and enforce legal privacy principles, especially transparency, intervenability, and informed consent. To achieve the goal of the thesis, different ways to improve ex-ante transparency and informed consent are investigated by designing and testing new solutions to make effective consent forms. Moreover, ex-post transparency and intervenability are improved by designing a transparency enhancing tool and investigating users' perceptions of data portability and transparency in the tool. The results of this thesis contribute to the body of knowledge by mapping legal privacy principles to HCI solutions, unveiling HCI problems and answers when aiming for legal compliance, and proposing effective designs to obtain informed consent.
The new General Data Protection Regulation (GDPR) strengthens people’s rights for transparency, intervenability, and consent. The legal privacy principles have Human-Computer Interaction (HCI) implications. Besides aiming for legal compliance, it is of paramount importance to investigate how to provide individuals with usable and user-centric transparency, intervenability, and consent. The objective of this thesis is to propose usable tools and solutions, to enhance people's control and enforce legal privacy principles, especially transparency, intervenability, and informed consent. To achieve the goal of the thesis, different ways to improve ex-ante transparency and informed consent are investigated by designing and testing new solutions to make effective consent forms. Moreover, ex-post transparency and intervenability are improved by designing a transparency enhancing tool and investigating users' perceptions of data portability and transparency in the tool. The results of this thesis contribute to the body of knowledge by mapping legal privacy principles to HCI solutions, unveiling HCI problems and answers when aiming for legal compliance, and proposing effective designs to obtain informed consent.

The 3. article was in manuscript form at the time of the licentiate defense: Karegar, F. / User Evaluations of an App Interface for Cloud-based Identity Management / / Manuskript (preprint)

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Morel, Victor. "Enhancing transparency and consent in the internet of things." Thesis, Lyon, 2020. http://www.theses.fr/2020LYSEI073.

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Le nombre d’appareils connectés à Internet ne cesse d’augmenter, certaines perspectives prédisant 75 milliards d’appareils d’ici 2025. L’Internet des Objets envisagé il y a 20 ans se matérialise à une vitesse soutenue, mais cette croissance n’est pas sans conséquence. Le nombre croissant d’appareils suscite en effet des possibilités de surveillance jamais vu auparavant. Un cap a été franchi en 2018 pour la protection de l’intimité numérique (privacy), avec la mise en application du Règlement Européen sur la Protection des Données (RGPD) dans l’Union Européenne. Il impose des obligations aux responsables de traitements sur le contenu de l’information à communiquer aux personnes concernées à propos de la collecte et du traitement de leurs données personnelles, ainsi que sur les moyens de communiquer cette information. Cette information est d’autant plus importante qu’elle est une condition préalable à la validité du consentement. Cependant, l’Internet des Objets peut poser des difficultés pour mettre en place la communication de l’information nécessaire à la validité légale d’un traitement, ainsi qu’à la gestion du consentement. La tension entre les exigences du RGPD à propos de l’information et du consentement et l’Internet des Objets n’est pas chose facile à résoudre. Ce n’est cependant pas impossible. Le but de cette thèse est de fournir une solution pour la communication de l’information et la gestion du consentement dans l’Internet des Objets. Pour ce faire, nous proposons un cadre conceptuel générique pour la communication de l’information et la gestion du consentement dans l’Internet des Objets. Ce cadre conceptuel est composé d’un protocole de communication et de négociation des politiques de protection de la vie privée (privacy policies), d’exigences pour la présentation de l’information et l’interaction avec les personnes concernées, ainsi que d’exigences pour la démonstration du consentement. Nous soutenons la faisabilité de ce cadre conceptuel générique avec différentes options de mise en oeuvre. La communication de l’information et du consentement peut être effectuée de deux manières : directement et indirectement. Nous proposons ensuite différentes manières de mettre en oeuvre la présentation de l’information et la démonstration du consentement. Un espace de conception (design space) est aussi proposé à destination des concepteurs de systèmes, afin d’aider à choisir entre différentes options de mise en oeuvre. Enfin, nous proposons des prototypes fonctionnels, conçus pour démontrer la faisabilité des options de mise en oeuvre du cadre conceptuel. Nous illustrons comment la communication indirecte de l’information peut être mise en oeuvre au sein d’un site web collaboratif appelé Map of Things. Nous présentons ensuite la communication directe de l’information et du consentement combinée à un agent présentant l’information aux personnes concernées à travers une application mobile nommée CoIoT
In an increasingly connected world, the Internet permeates every aspect of our lives. The number of devices connected to the global network is rising, with prospects foreseeing 75 billions devices by 2025. The Internet of Things envisioned twenty years ago is now materializing at a fast pace, but this growth is not without consequence. The increasing number of devices raises the possibility of surveillance to a level never seen before. A major step has been taken in 2018 to safeguard privacy, with the introduction of the General Data Protection Regulation (GDPR) in the European Union. It imposes obligations to data controllers on the content of information about personal data collection and processing, and on the means of communication of this information to data subjects. This information is all the more important that it is required for consent, which is one of the legal grounds to process personal data. However, the Internet of Things can pose difficulties to implement lawful information communication and consent management. The tension between the requirements of the GDPR for information and consent and the Internet of Things cannot be easily solved. It is however possible. The goal of this thesis is to provide a solution for information communication and consent management in the Internet of Things from a technological point of view. To do so, we introduce a generic framework for information communication and consent management in the Internet of Things. This framework is composed of a protocol to communicate and negotiate privacy policies, requirements to present information and interact with data subjects, and requirements over the provability of consent. We support the feasibility of this generic framework with different options of implementation. The communication of information and consent through privacy policies can be implemented in two different manners: directly and indirectly. We then propose ways to implement the presentation of information and the provability of consent. A design space is also provided for systems designers, as a guide for choosing between the direct and the indirect implementations. Finally, we present fully functioning prototypes devised to demonstrate the feasibility of the framework’s implementations. We illustrate how the indirect implementation of the framework can be developed as a collaborative website named Map of Things. We then sketch the direct implementation combined with the agent presenting information to data subjects under the mobile application CoIoT
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Adjerid, Idris. "Uninformed Consent: The Benefits and Limits of Transparency and Choice in Privacy Decision Making." Research Showcase @ CMU, 2013. http://repository.cmu.edu/dissertations/403.

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Solutions to privacy concerns centered on notifying consumers about (transparency), and granting them control over the collection and use of their personal information (choice) are pervasive. Policy makers posit that these measures will aid consumers in improved privacy decision making. Conversely, scholars argue that these protections may have a negative impact on market efficiency and firm technology innovation and adoption. Chapter 2 evaluates the impact of regulation providing consumers transparency and choice on technology adoption by hospitals and finds, in contrast to prior results, evidence for a beneficial role of privacy regulation. I also find evidence that these gains may be a result of reduced barriers to adoption stemming from consumer privacy concerns. In Chapters 3 and 4 I shift my focus to evaluate the premise proposed by policy makers that increased transparency and choice will improve consumer privacy decision making. In Chapter 3, I first find that simple privacy notices communicating lower privacy decision making. I Chapter 3, I first find that simple privacy notices communication lower privacy protection can, under some conditions, result in less disclosure from participants, in-line with the policy aims for increased transparency. However, I also find that simple and common changes in those same notices, exploiting individual heuristics and biases, can result in the effect of even straightforward and accessible privacy notices being predictably manipulated (Experiment 1) or entirely thwarted (Experiment 2). Finally, in chapter 4 I find substantial malleability in individual privacy decision making in response to changes in choice framing. Specifically, the labeling of settings, the mix of setting relevance, and the presentation of choices as a choice to reject all impacted the decision frame for participants in a manner that significantly influenced participants' choice of privacy protective settings. Taken together, these results suggest that while privacy solutions centered on transparency and choice may alleviate barriers to technology adoption stemming from consumer privacy concerns, the implicit assumption that they will reduce consumer privacy risks may be questioned. Implications for policy makers include a persistence, and perhaps increase, in consumer privacy risks despite increased transparency and control.
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Ryde, Michael Daniel. "A high usability transparency framework for model interoperability using COTS simulation packages." Thesis, Brunel University, 2005. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.425026.

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Korjonen, M. H. "Clinical trial information : developing an effective model of dissemination and a framework to improve transparency." Thesis, University College London (University of London), 2012. http://discovery.ucl.ac.uk/1344051/.

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Purpose: The research aim has two parts: Firstly, to characterise and evaluate clinical trial information and the dissemination of that information by constructing a conceptual model structuring the processes of information generation. Secondly, to test the model by identifying the dissemination methods used, consider their effectiveness and what factors affect dissemination. The research findings contribute to outline a framework of recommendations with an optimal model of effective dissemination for improved transparency in clinical research. Design and methodology: Based on the literature review, a conceptual model was constructed outlining the structure of information generation throughout the clinical research process. A mixed approach with qualitative and quantitative studies were undertaken to form a comprehensive picture of the dissemination of clinical trial information and in order to test the model. Key findings: The model identified that clinical trial information is very complex, scattered across many resources and many factors affect how, where and what clinical trial information is disseminated. A model of effective dissemination and a framework of recommendations for improved transparency in dissemination were drawn up for three areas; regulations and standards, communication planning and the organisation of clinical trial information. Limitations: This research has been done during a time of significant and rapid change in the clinical research environment and therefore this thesis is a snapshot of a time when new web tools allows for information to be disseminated rapidly. A series of small studies were made to gather an overall picture of information transparency in clinical trials as we lack evidence in these new areas. Originality/value: There is no existing conceptual model that explains and tests the dissemination and transparency of clinical trial information. Models can structure processes, suggest improvements in the processes and be used as a basis for further research.
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Mushi, Shirley Baldwin. "Transparency and accountability in the legal framework governing the upstream hydrocarbon industry in Tanzania mainland." Doctoral thesis, Faculty of Law, 2020. http://hdl.handle.net/11427/32852.

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It is widely believed that the slow socio-economic development of resource rich countries may be curbed by the promotion of transparency and accountability in resource governance. There is a universal consensus among politicians, multilateral institutions, corporations, and civil societies that the ‘paradox of plenty' and its associated social ills of corruption, poverty and conflict are mainly due to the lack of transparent and accountable resource governance. Nations have thus adopted policies and legal frameworks on resource governance that seek to codify and implement the principles of transparency and accountability. Even so, transparency and accountability are still far from being realised in most developing nations. This thesis argues that transparency and accountability may only be realised in practice if their aspects are duly incorporated in the law. Using the conceptual foundations on the governance principles of transparency and accountability, the thesis identifies four components that a legal framework ought to incorporate to foster transparency and accountability in practice. First, there has to be clear provisions establishing accountability relationships in the legal framework. Questions on who the actors are, who is to be called to account, who is entitled to hold another to account, and for what could one be held accountable have to be made very clear in the law. Even within the framework of multiple accountability mechanisms clarity of the circumstance the various mechanisms function is key. Equally, transparency relationships have to be clear on the kind and nature of the information to be disclosed, to whom it may be disclosed, at what time and in which manner such information may be disclosed. Second, the legal framework must provide for suitable accountability implementation mechanisms that give the accountor the required independence and mandate to inquire, render judgment and have the capacity to put its decisions to effect. Third, the legal framework ought to be able to create a well-coordinated web of accountability structures to provide for checks and balances. The legal framework should be able to ensure that actors given authority to fulfil their obligations are able to answer and face vigorous scrutiny and verification processes by independent actors. Lastly, the legal framework has to facilitate access to clear, reliable and complete information by interested parties and the public to promote transparency. The thesis uses these components to conduct an appraisal of the legal and institutional framework governing hydrocarbons in Tanzania. It establishes whether the governance aspects of transparency and accountability are duly incorporated in the legal framework to ensure their implementation in practice. It concludes that Tanzania's legal framework on hydrocarbons recognises on paper the value of transparency and accountability, but it largely fails to incorporate them sufficiently in a way that ensures they are fully implemented.
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LARSEN, ALEXANDER, and PONTUS LINDQUIST. "A performance measurement framework for R&D activitiesIncreasing transparency of R&D value contribution." Thesis, KTH, Industriell Management, 2016. http://urn.kb.se/resolve?urn=urn:nbn:se:kth:diva-199223.

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To measure the performance of research and development organizations has long been a difficult task and still is partly due to the complex nature of its processes and activities, but also since the outcome in many cases can be seen first after many years. Also, the outcome is dependent on efforts from several other business functions within an organization. There has been a shift in how organizations view R&D, from being technology-push centered, where R&D had full responsibility of all innovations, to collaborating with innovation across functions within a company. Historically, R&D has been considered to be impossible to manage and control, but as the development has taken place R&D is now aligned with an organization’s business strategy. There is a vast amount of literature on performance measurement systems with focus on R&D to access, however, the focus of that research has been on evaluating performance of an entire R&D department or a specific project and not as much can be found on how to evaluate R&D related activities, which is what this thesis centers on. The research in this thesis has been done by conducting a case study at Sandvik Materials Technology’s R&D department in Sandviken, Sweden. Three case study objects have been studied within the case study and these objects are the OCTG project, non-destructive testing and hydraulic & instrumentation tubing. The case study consisted of interviews with employees at various functions within the company, an extensive literature review as well as a review of internal documentation. The result from the case study has been the design of a performance measurement  ramework and its application to the three case study objects, illustrating that it is possible to measure the performance of R&D related activities, thus, enabling a more transparent view of what value R&D contributes with. The framework is created in a way that allows for other organizations with similar settings as the one currently in place at Sandvik Materials Technology to utilize it. Implications from the findings have an impact both from an industrial and research perspective, but also from a sustainability perspective. The industrial implication is that a framework for evaluating and illustrating the performance of a R&D organization on an activity level has been designed. Considering the research aspects, this research contributes to the identified gap in the existing body of knowledge, providing additional knowledge on performance measurement systems on an activity level. From a sustainability perspective the framework enables monitoring and supervising of important processes, which could stimulate employees to undertake necessary actions, potentially leading to reduced negative impact on the environment since a lesser amount of resources and energy is consumed.
Att mäta prestationen av forskning- och utvecklingsorganisationer har länge varit en svår uppgift, vilket det fortfarande delvis är på grund av de komplexa processer och aktiviteter som existerar. Detta beror även på att resultatet av forskning och utveckling (FoU) ej synliggörs förrän långt senare. Vidare är resultatet av FoU beroende av insatser från andra funktioner inom en organisation. Det har skett ett skifte i hur organisationer ser på forskning och utveckling, från att tidigare varit drivna av att utveckla teknologier med fullständigt ansvar för innovationer till att nu arbeta med innovation över funktionsgränserna som existerar i en organisation. Historiskt sett har FoU setts som omöjligt att styra och kontrollera men i takt med att skiftet har skett så är forskning och utveckling nu i linje med en organisations affärsstrategi. Litteratur på ämnet prestationsmätningssystem med fokus på FoU finns att tillgå, men fokus i de studierna har varit att utvärdera prestationen av hela FoU-organisationer eller specifika projekt. Desto mindre finns på ämnet hur man utvärderar FoU-relaterade aktiviteter, vilket är fokus i denna studie. Studien i detta arbete har utförts som en fallstudie på Sandvik Materials Technology’s forsknings- och utvecklingsenhet i Sandviken, Sverige. Tre fallstudieobjekt har studerats inom fallstudien och dessa objekt är OCTG-projektet, oförstörande provning och hydraulik- och instrumentrör. Fallstudien har bestått av intervjuer med anställda på diverse funktioner inom företaget och en extensiv genomgång av litteratur har gjorts samt en genomgång av intern dokumentation. Resultatet från fallstudien blev skapandet av ett ramverk för prestationsmätning och en tillämpning på de tre fallstudieobjekten, vilket syftar till att illustrera möjligheten att mäta prestationen av FoU-relaterade aktiviteter. Detta leder till en mer transparent syn på vilket värde forskning och utveckling bidrar med. Ramverket har skapats på ett sätt som möjliggör organisationer med liknande struktur som existerar på Sandvik Materials Technology att utnyttja det. Implikationerna från resultaten har en inverkan både ur ett industriellt perspektiv och ur ett forskningsperspektiv men även ur ett hållbarhetsperspektiv. Den industriella implikationen är att ett ramverk för utvärdering och synliggörande av prestationer av en forsknings- och utvecklingsorganisation på en aktivitetsnivå har skapats. Vid betraktande av forskningsperspektivet så bidrar denna studie till att fylla det identifierade gapet i kunskapsbanken genom att tillföra ytterligare kunskap av prestationsmätning på en aktivitetsnivå. Ramverket möjliggör övervakning och kontroll av viktiga processer, vilket kan motivera anställda att vidta nödvändiga åtgärder, som kan leda till reducerad negativ inverkan på miljön då en mindre mängd resurser och energi används.
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Robol, Marco. "Consent modeling and verification: privacy regulations compliance from business goals to business processes." Doctoral thesis, Università degli studi di Trento, 2020. http://hdl.handle.net/11572/277802.

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Privacy regulations impose on companies limitations about the collection, use, and disclosure of user data. One of the actions most companies undertake for this, consists in modifying their systems with processes for consent acquisition and management. Unfortunately, where systems are large and with many dependencies, they often also have little documentation, and knowledge on the system is distributed among different domain experts. These circumstances make the re-engineering of systems a tedious and complex, if not impossible, activity. This PhD Thesis proposes a model-based method with a top-down approach, for modeling consent requirements and analyzing compliance with regulations, by refinement of models from organizational structure down to business processes. The method is provided with guidelines in the form of a process and includes modeling languages and reasoning frameworks for the analysis of requirements with respect to a preset of privacy principles on consent. The Thesis includes validations with realistic scenarios and with domain practitioners from the healthcare domain.
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Books on the topic "Transparency and Consent Framework"

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S, Miller Donald. Transparency masters to accompany "Fundamentals of management : a framework for excellence". Minneapolis/St. Paul: West, 1996.

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Nyamori, Bosire. An assessment of the legal framework for budget transparency, participation and management in Kenya. Nairobi, Kenya: Institute of Policy Analysis and Research, 2008.

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Organisation for economic co-operation and development. Global forum on transparency and exchange of information for tax purposes peer reviews: Kenya 2013 : phase 1, legal and regulatory framework. Paris: OECD, 2013.

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Organisation for economic co-operation and development. Global forum on transparency and exchange of Information for tax purposes peer reviews: Mauritania 2015 : phase 1, legal and regulatory framework. Paris]: OECD, 2015.

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Organisation for economic co-operation and development. Global forum on transparency and exchange of information for tax purposes peer reviews: Latvia 2014 : phase 1, legal and regulatory framework. Paris]: OECD, 2014.

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Organisation for economic co-operation and development. Global forum on transparency and exchange of information for tax purposes peer reviews: Saudi Arabia 2014 : phase 1, legal and regulatory framework. Paris]: OECD, 2014.

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India) CUTS Centre for Consumer Action Research & Training (Jaipur. Model framework for replication: Usages of RTI in rural Rajasthan, India, enchancing transparency and reforming the processes. Jaipur: CUTS Centre for Consumer Action Research & Training, 2010.

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Price, David P. T. Human tissue in transplantation and research: A model legal and ethical donation framework. Cambridge, UK: Cambridge University Press, 2009.

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Organisation for economic co-operation and development. Global forum on transparency and exchange of information for tax purposes peer reviews: The Seychelles 2011 : phase 1 : legal and regulatory framework. [Paris]: OECD, 2011.

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Purposes, Global Forum on Transparency and Exchange of Information for Tax. Global forum on transparency and exchange of information for tax purposes peer reviews: El Salvador 2015 : phase 1, legal and regulatory framework. Paris: OECD, 2015.

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Book chapters on the topic "Transparency and Consent Framework"

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Gradow, Lisa, and Ramona Greiner. "Das IAB Transparency & Consent Framework – eine Branche rettet sich selbst." In Quick Guide, 61–78. Wiesbaden: Springer Fachmedien Wiesbaden, 2021. http://dx.doi.org/10.1007/978-3-658-33021-7_2.

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Board, John, Charles Sutcliffe, and Stephen Wells. "A New Regulatory Framework." In Transparency and Fragmentation, 254–61. London: Palgrave Macmillan UK, 2002. http://dx.doi.org/10.1057/9781403907073_10.

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Kirrane, Sabrina, Javier D. Fernández, Wouter Dullaert, Uros Milosevic, Axel Polleres, Piero A. Bonatti, Rigo Wenning, Olha Drozd, and Philip Raschke. "A Scalable Consent, Transparency and Compliance Architecture." In Lecture Notes in Computer Science, 131–36. Cham: Springer International Publishing, 2018. http://dx.doi.org/10.1007/978-3-319-98192-5_25.

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Comana, Mario, Daniele Previtali, and Luca Bellardini. "Market Infrastructure and Transparency Obligations." In The MiFID II Framework, 113–40. Cham: Springer International Publishing, 2019. http://dx.doi.org/10.1007/978-3-030-12504-2_5.

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Sagar, A. B. "A Framework for Transparency in SHGs." In Lecture Notes of the Institute for Computer Sciences, Social Informatics and Telecommunications Engineering, 612–26. Berlin, Heidelberg: Springer Berlin Heidelberg, 2012. http://dx.doi.org/10.1007/978-3-642-27308-7_65.

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Tokas, Shukun, and Olaf Owe. "A Formal Framework for Consent Management." In Formal Techniques for Distributed Objects, Components, and Systems, 169–86. Cham: Springer International Publishing, 2020. http://dx.doi.org/10.1007/978-3-030-50086-3_10.

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Schuler Scott, Arianna, Michael Goldsmith, and Harriet Teare. "Wider Research Applications of Dynamic Consent." In Privacy and Identity Management. Fairness, Accountability, and Transparency in the Age of Big Data, 114–20. Cham: Springer International Publishing, 2019. http://dx.doi.org/10.1007/978-3-030-16744-8_8.

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Shamseer, Larissa, and David Moher. "Reporting Guidelines: A Framework for Clarity and Transparency." In Reporting and Publishing Research in the Biomedical Sciences, 165–84. Singapore: Springer Singapore, 2017. http://dx.doi.org/10.1007/978-981-10-7062-4_18.

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Mancini, Daniela, and Rita Lamboglia. "Accounting Information System and Transparency: A Theoretical Framework." In Lecture Notes in Information Systems and Organisation, 249–61. Cham: Springer International Publishing, 2017. http://dx.doi.org/10.1007/978-3-319-49538-5_16.

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Aldribi, Abdulaziz, and Issa Traore. "A Game Theoretic Framework for Cloud Security Transparency." In Network and System Security, 488–500. Cham: Springer International Publishing, 2015. http://dx.doi.org/10.1007/978-3-319-25645-0_37.

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Conference papers on the topic "Transparency and Consent Framework"

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Pawlata, Hubert, and Gültekin Cakir. "The Impact of the Transparency Consent Framework on Current Programmatic Advertising Practices." In Special Session on User Decision Support and Human Interaction in Digital Retail. SCITEPRESS - Science and Technology Publications, 2020. http://dx.doi.org/10.5220/0010214603310336.

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Matte, Celestin, Nataliia Bielova, and Cristiana Santos. "Do Cookie Banners Respect my Choice? : Measuring Legal Compliance of Banners from IAB Europe’s Transparency and Consent Framework." In 2020 IEEE Symposium on Security and Privacy (SP). IEEE, 2020. http://dx.doi.org/10.1109/sp40000.2020.00076.

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Castelluccia, Claude, Mathieu Cunche, Daniel Le Metayer, and Victor Morel. "Enhancing Transparency and Consent in the IoT." In 2018 3rd IEEE European Symposium on Security and Privacy Workshops (EuroS&PW). IEEE, 2018. http://dx.doi.org/10.1109/eurospw.2018.00023.

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Madadevaiah, Geetha, RV Prasad, Amogh Hiremath, Michel Dumontier, and Andre Dekker. "Consent Based Access Policy Framework." In 7th International Conference on Computational Science and Engineering. AIRCC Publication, 2019. http://dx.doi.org/10.5121/csit.2019.90504.

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Darby-Taylor, James, Fernando Luís-Ferreira, João Sarraipa, and Ricardo Jardim-Goncalves. "The Acquisition and Management of Healthcare Data, Within a Hospital Infrastructure." In ASME 2020 International Mechanical Engineering Congress and Exposition. American Society of Mechanical Engineers, 2020. http://dx.doi.org/10.1115/imece2020-24120.

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Abstract The quality of care provided to citizens by professionals and institutions depends on the quality and availability of information. Early commencement of treatment and medication, and the decisions on how to proceed, depend a lot on patients’ data in the different modalities available. It is also important to notice that large pools of data help inform health and wellbeing parameters for the largest possible community. To make that possible it is necessary both to have the best hospital practices but also to get consent and collaboration from patients. In order to accomplish such a goal, it is necessary to use practices, which adhere to legal constraints and are transparent while handling data and also to transmit those practices and protocols to professionals and patients. The present document aims to provide a framework envisaging the seamless application of the clinical procedures, following legal guidance and making the process known, secure and trustworthy. It aims to contribute to clinical practice, and clinical research, thereby contributing to big data analysis by ensuring trust and best clinical data handling.
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Kuntardjo, Carolina, and Agus Hernoko. "TRANSPARENCY PRINCIPLES IN INFORMED CONSENT OF SURGICAL PROCEDURES TO REDUCE MEDICAL DISPUTE RISK." In International Conference on Law, Governance and Globalization 2017 (ICLGG 2017). Paris, France: Atlantis Press, 2018. http://dx.doi.org/10.2991/iclgg-17.2018.9.

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Bonnici, Christian J., and Lizzie Coles-Kemp. "Principled Electronic Consent Management: A Preliminary Research Framework." In 2010 International Conference on Emerging Security Technologies (EST). IEEE, 2010. http://dx.doi.org/10.1109/est.2010.21.

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Li, Wen, Weicong Wang, and Ivan Marsic. "Collaboration transparency in the DISCIPLE framework." In the international ACM SIGGROUP conference. New York, New York, USA: ACM Press, 1999. http://dx.doi.org/10.1145/320297.320336.

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Morel, Victor, Mathieu Cunche, and Daniel Le Metayer. "A Generic Information and Consent Framework for the IoT." In 2019 18th IEEE International Conference On Trust, Security And Privacy In Computing And Communications/13th IEEE International Conference On Big Data Science And Engineering (TrustCom/BigDataSE). IEEE, 2019. http://dx.doi.org/10.1109/trustcom/bigdatase.2019.00056.

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Arcelus, Josune. "Framework for useful transparency websites for citizens." In the 6th International Conference. New York, New York, USA: ACM Press, 2012. http://dx.doi.org/10.1145/2463728.2463749.

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Reports on the topic "Transparency and Consent Framework"

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McClellan, Yvonne, David L. York, Naoko Inoue, Tracia L. Love, and Gary Eugene Rochau. A framework and methodology for nuclear fuel cycle transparency. Office of Scientific and Technical Information (OSTI), February 2006. http://dx.doi.org/10.2172/923178.

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Rosenberg, J., and D. Willis. A Framework for Consent-Based Communications in the Session Initiation Protocol (SIP). Edited by G. Camarillo. RFC Editor, October 2008. http://dx.doi.org/10.17487/rfc5360.

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Mendez, Carmen Margarita, David L. York, Naoko Inoue, Takuya Kitabata, Eric D. Vugrin, Kay White Vugrin, Gary Eugene Rochau, and Virginia D. Cleary. Incorporation of a risk analysis approach for the nuclear fuel cycle advanced transparency framework. Office of Scientific and Technical Information (OSTI), May 2007. http://dx.doi.org/10.2172/912653.

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Lehtimaki, Susanna, Aisling Reidy, Kassim Nishtar, Sara Darehschori, Andrew Painter, and Nina Schwalbe. Independent Review and Investigation Mechanisms to Prevent Future Pandemics: A Proposed Way Forward. United Nations University International Institute for Global Health, April 2021. http://dx.doi.org/10.37941/rr/2021/1.

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The COVID-19 pandemic has created enormous challenges for national economies, livelihoods, and public services, including health systems. In January 2021, the World Health Organization proposed an international treaty on pandemics to strengthen the political commitment towards global pandemic preparedness, control, and response. The plan is to present a draft treaty to the World Health Assembly in May 2021. To inform the design of a support system for this treaty, we explored existing mechanisms for periodic reviews conducted either by peers or an external group as well as mechanisms for in-country investigations, conducted with or without country consent. Based on our review, we summarized key design principles requisite for review and investigation mechanisms and explain how these could be applied to pandemics preparedness, control, and response in global health. While there is no single global mechanism that could serve as a model in its own right, there is potential to combine aspects of existing mechanisms. A Universal Periodic Review design based on the model of human rights treaties with independent experts as the authorized monitoring body, if made obligatory, could support compliance with a new pandemic treaty. In terms of on-site investigations, the model by the Committee on Prevention of Torture could lend itself to treaty monitoring and outbreak investigations on short notice or unannounced. These mechanisms need to be put in place in accordance with several core interlinked design principles: compliance; accountability; independence; transparency and data sharing; speed; emphasis on capabilities; and incentives. The World Health Organization can incentivize and complement these efforts. It has an essential role in providing countries with technical support and tools to strengthen emergency preparedness and response capacities, including technical support for creating surveillance structures, integrating non-traditional data sources, creating data governance and data sharing standards, and conducting regular monitoring and assessment of preparedness and response capacities.
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Fuentes, J. Rodrigo, Klaus Schmidt-Hebbel, and Raimundo Soto. Fiscal Rule and Public Investment in Chile. Inter-American Development Bank, March 2021. http://dx.doi.org/10.18235/0003105.

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This paper reviews the design and operation of the Chilean fiscal rule in the past 30 years. Using different empirical approaches, we assess its impact on fiscal procyclicality, public debt, and public investment. While there has been substantial progress in building a modern institutional framework for fiscal policy, we find that the rule is incomplete in two dimensions: it lacks an escape clause, and it needs to supplement the budget balance rule with a debt rule. The former is seen in the pervasive inability of the authorities to steer fiscal accounts back to their long-term sustainable path after the rule was breached the rule in 2009. The latter issue is illustrated by the speedy build-up of the public debt as a result of the need to finance fiscal deficits. We do not find, nevertheless, a negative impact of the rule on public investment. We propose reforms to improve on transparency and accountability, as well as to supplement the rule with escape clauses and a debt anchor.
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Klein, Richard, Katy Harris, Inès Bakhtaoui, Andrea Lindblom, and Marcus Carson. Building climate diplomacy back better: imagining the UNFCCC meetings of tomorrow. Stockholm Environment Institute, September 2021. http://dx.doi.org/10.51414/sei2021.019.

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Could the future of our planet be decided on Zoom? The feasibility of “online climate negotiations” was the issue the OnCliNe project initially set out to assess. However, experiences over the last 18 months illustrated that many of the diverse activities organised under the umbrella of the United Nations Framework Convention on Climate Change (UNFCCC) could be held online, albeit with challenges. The real question was whether they could be held in ways that increase the effectiveness, inclusiveness and transparency of the UNFCCC process. This report reflects the sentiment of many stakeholders that there is an opportunity to harness the interruption and introspection that the pandemic imposed into a “positive disruption” of the process. If actions taken now can transcend the tendency to return to “business as usual” as soon as circumstances allow, and instead work towards a meaningful transformation of the climate talks, the UNFCCC process can be made more fit for purpose for tackling one of humanity’s greatest challenges. This will require creativity, courage, and active and decisive leadership.
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Niebler, Rebecca. Abfallwirtschaftliche Geschäftsmodelle für Textilien in der Circular Economy. Sonderforschungsgruppe Institutionenanalyse, September 2020. http://dx.doi.org/10.46850/sofia.9783941627833.

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This master thesis explores the challenges for waste management business models in the field of textiles regarding the requirements of the circular economy, as well as improvement potentials in the current framework conditions. It is concerned with the research question: "Is it advisable to change the frame-work conditions at meso or macro level, with regard to business models for waste management companies in the textile sector that are oriented towards the requirements of the circular economy, and - if so - in what way?” The approach of the study is based on the delta analysis of the e Society for Institutional Analysis at the Darmstadt University of Applied Sciences. It compares the target state of the normative requirements with the actual state of the textile and waste management framework conditions and attempts to identify the gaps (the delta). Based on the delta, it develops approaches that are intended to help reduce the gaps. The thesis develops three business models for the target year 2025 in different areas: an exchange platform for sorters, recyclers and designers, an automatic sorting plant and a plant for fibre-to-fibre recycling of mixed materials. It is becoming clear that these business models cannot meet the target requirements for the circular economy. The analysis identifies the remaining gaps in the framework conditions as the main problem. For example, insufficient innovation impulses and the lack of competitiveness of secondary raw materials inhibit the actors from applying and using new technologies and business models. Restricted access to knowledge and information, as well as a lack of transparency between the actors, also prove to be problematic. In order to answer the research question, the study recommends altering the framework conditions at meso and macro level. It proposes a platform for cooperation between designers, the introduction of a material declaration system and an eco-design guideline for textiles as possible development options. In addition, this work offers a matrix of criteria to help the actors test and improve their new waste management business models regarding their suitability for the circular economy. The analysis is carried out from an outsider's perspective on the entire textile industry. It therefore cannot cover and deal with all aspects and individual circumstances of each player in detail. The necessary changes in the framework conditions that have been identified can therefore be used as a basis for further investigations.
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