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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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Lambert-Obry, Véronique, Jean-Philippe Lafrance, Michelle Savoie, Sandrine Henri, and Jean Lachaine. "Review of real-world evidence studies in type 2 diabetes mellitus: Lack of good practices." International Journal of Technology Assessment in Health Care 36, no. 4 (June 24, 2020): 372–79. http://dx.doi.org/10.1017/s0266462320000392.
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ObjectivesUnlike randomized controlled trials, lack of methodological rigor is a concern about real-world evidence (RWE) studies. The objective of this study was to characterize methodological practices of studies collecting pharmacoeconomic data in a real-world setting for the management of type 2 diabetes mellitus (T2DM).MethodsA systematic literature review was performed using the PICO framework: population consisted of T2DM patients, interventions and comparators were any intervention for T2DM care or absence of intervention, and outcomes were resource utilization, productivity loss or utility. Only RWE studies were included, defined as studies that were not clinical trials and that collected de novo data (no retrospective analysis).ResultsThe literature search identified 1,158 potentially relevant studies, among which sixty were included in the literature review. Many studies showed a lack of transparency by not mentioning the source for outcome and exposure measurement, source for patient selection, number of study sites, recruitment duration, sample size calculation, sampling method, missing data, approbation by an ethics committee, obtaining patient's consent, conflicts of interest, and funding. A significant proportion of studies had poor quality scores and was at high risk of bias.ConclusionsRWE from T2DM studies lacks transparency and credibility. There is a need for good procedural practices that can increase confidence in RWE studies. Standardized methodologies specifically adapted for RWE studies collecting pharmacoeconomic data for the management of T2DM could help future reimbursement decision making in this major public health problem.
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Jahns, Roland, Jörg Geiger, Irene Schlünder, Daniel Strech, Matthias Brumhard, and Sebastian Graf von Kielmansegg. "Broad donor consent for human biobanks in Germany and Europe: a strategy to facilitate cross-border sharing and exchange of human biological materials and related data." Journal of Laboratory Medicine 43, no. 6 (December 18, 2019): 291–99. http://dx.doi.org/10.1515/labmed-2017-0064.
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Abstract Background Human biobanks are generally recognized as essential resources for effective biomedical research. All over the world biosamples and data from human subjects are collected in large biobanks. The biological material is stored long term for current and future (undetermined) research issues, which often require cross-border exchange of biosamples and related data. Content Commonly, the informed consent for research on human biospecimen is intended to cover only defined, specific research objectives. In June 2016, the biobank Task-Force of the Working Party of the German Medical Ethics Committees (WP-GMEC) updated its template for the broad use of human biological samples and related data. It complies with the current Organisation for Economic Co-operation and Development (OECD) and World Medical Association (WMA) recommendations and furnishes a framework that permits long-term storage and multi-purpose research use of human biological material and related data, including cross-border research. However, both (i) human biobanks storing and (ii) research projects requesting “broad consent” biological samples generally require an ethical approval; in addition, “broad consent” conditions should be reciprocated by making biobank processes transparent and by fostering both donor and public involvement. Outlook The broad consent template of the WP-GMEC clearly states that biological samples and data donated for medical research serve to address current and future research questions. It appears perfectly suited as a template for a Europe-wide harmonized broad consent facilitating biobank-based cross-border research.
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Hau, Yong Sauk, Jae Min Lee, Jaechan Park, and Min Cheol Chang. "Attitudes Toward Blockchain Technology in Managing Medical Information: Survey Study." Journal of Medical Internet Research 21, no. 12 (December 9, 2019): e15870. http://dx.doi.org/10.2196/15870.
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Background The recently developed blockchain technology uses a peer-to-peer network to distribute data to all participants for storage. This method enhances data safety, reliability, integrity, and transparency. To successfully introduce blockchain technology to medical data management, it is essential to obtain consent from medical doctors and patients. Objective The aim of this study was to examine medical doctors’ and patients’ attitudes toward the use of blockchain technology and interpret the findings within the framework of expectancy theory. Methods In this questionnaire survey, we examined medical doctors’ (n=90) and patients’ (n=90) attitudes toward the use of blockchain technology in the management and distribution of medical information. The questionnaire comprised 8 questions that assessed attitudes toward new means of managing and distributing medical information using blockchain technology. Responses were rated on a scale that ranged from 1 (very negative) to 7 (very positive). Results Medical doctors (mean 3.7-5.0) reported significantly more negative attitudes than patients (mean 6.3-6.8). Furthermore, self-employed doctors reported more negative attitudes than employed doctors and university professors. Conclusions To successfully introduce blockchain technology to medical data management, it is necessary to promote positive attitudes toward this technology among medical doctors, especially self-employed doctors.
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Valtysson, Bjarki, Rikke Frank Jørgensen, and Johan Lau Munkholm. "Co-constitutive complexity." Nordicom Review 42, no. 1 (January 1, 2021): 124–40. http://dx.doi.org/10.2478/nor-2021-0033.
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Abstract Google is the gateway to the Internet for billions of people. However, to use Google’s multiple platforms and services, users must accept Google’s terms. With the advent of the EU’s GDPR (General Data Protection Regulation), Google made significant changes to these terms. In this article, we scrutinise the intertextual relations between Google’s privacy policies and terms of service (ToS) and the GDPR – and the discursive co-constitutive complexity within and between these frameworks. We argue that the material and communicative articulation of Google’s privacy policies and ToS should be understood as deliberative data politics delimiting users’ agency, consent, and privacy. Furthermore, we emphasise complexity and the demands of reducing complexity as two opposing dynamics. While the GDPR required Google to make its terms and policies clearer and more understandable, ironically, in the process of accommodating GDPR’s demand of increased transparency, the discursive complexity of Google’s policies has in fact increased.
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Drepper, Johannes. "Data protection in biobanks from a practical point of view: what must be taken into account during set-up and operation?" Journal of Laboratory Medicine 43, no. 6 (December 18, 2019): 301–9. http://dx.doi.org/10.1515/labmed-2018-0112.
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Abstract The European General Data Protection Regulation (GDPR) incorporates many of the principles of data protection that were already in force in the past. Insofar the data protection requirements for German biobanks have not fundamentally changed since the GDPR became applicable in May 2018. In detail, however, new and relevant requirements have been added. Due to many derogation clauses that allow national deviations, federal and state laws must also be taken into account in Germany, depending on the legal form of the biobank or the supporting institution, which increases the complexity in individual cases. Research-oriented biobanks can still rely on informed, voluntary and explicit consent from patients or test persons. Other legal bases are also possible in certain cases. The information and transparency requirements have increased with the DSGVO, which has led to higher administrative costs. However, a major problem existed before and continues to exist in clarifying how biobanks deal with the right to know and the right not to know of their subjects, how this is explained in advance and which policy can be implemented in the long term, also in the context of targeted recruitment for later studies. The complexity of the regulatory framework and the resulting demands on biobanks make the development and implementation of standards unavoidable. In addition, it is recommended that such infrastructures be centralised, professionalised and equipped with the necessary resources.
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Nichol, Ariadne A., and Annick Antierens. "Ethics of emerging infectious disease outbreak responses: Using Ebola virus disease as a case study of limited resource allocation." PLOS ONE 16, no. 2 (February 2, 2021): e0246320. http://dx.doi.org/10.1371/journal.pone.0246320.
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Emerging infectious diseases such as Ebola Virus Disease (EVD), Nipah Virus Encephalitis and Lassa fever pose significant epidemic threats. Responses to emerging infectious disease outbreaks frequently occur in resource-constrained regions and under high pressure to quickly contain the outbreak prior to potential spread. As seen in the 2020 EVD outbreaks in the Democratic Republic of Congo and the current COVID-19 pandemic, there is a continued need to evaluate and address the ethical challenges that arise in the high stakes environment of an emerging infectious disease outbreak response. The research presented here provides analysis of the ethical challenges with regard to allocation of limited resources, particularly experimental therapeutics, using the 2013–2016 EVD outbreak in West Africa as a case study. In-depth semi-structured interviews were conducted with senior healthcare personnel (n = 16) from international humanitarian aid organizations intimately engaged in the 2013–2016 EVD outbreak response in West Africa. Interviews were recorded in private setting, transcribed, and iteratively coded using grounded theory methodology. A majority of respondents indicated a clear propensity to adopt an ethical framework of guiding principles for international responses to emerging infectious disease outbreaks. Respondents agreed that prioritization of frontline workers’ access to experimental therapeutics was warranted based on a principle of reciprocity. There was widespread acceptance of adaptive trial designs and greater trial transparency in providing access to experimental therapeutics. Many respondents also emphasized the importance of community engagement in limited resource allocation scheme design and culturally appropriate informed consent procedures. The study results inform a potential ethical framework of guiding principles based on the interview participants’ insights to be adopted by international response organizations and their healthcare workers in the face of allocating limited resources such as experimental therapeutics in future emerging infectious disease outbreaks to ease the moral burden of individual healthcare providers.
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Ferioli, Elena. "A serviceable Research Biobank model: Charter of Principles and Biobank Ethics Consultation Service (BECS) as a formal toolkit to promote an expert ethical guidance to biobank research." Medicina e Morale 70, no. 1 (April 12, 2021): 35–53. http://dx.doi.org/10.4081/mem.2021.928.
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The complexity of biobank research has recently increased generating a number of novel ethical issues. In recent years the University of Insubria is committed to provide specific training programs in Bioethics, Applied Ethics and Clinical Ethics aimed to face to critical topics related to medicine, research and biobanking. Actually we design the Insubria Biobank as a research infrastructure with an appropriate Ethical Framework and responsible for the custody of biospecimens and data according to a model of Charitable Trust. So to answer certain questions is crucial: How could biobank respect the trust placed in it? What resources could promote the goals of the biobank? Do professionals require a specific ethical training? This credit of trust must be fed and confirmed by the ethical choices of the biobank and ensuring maximum transparency and traceability of decisions. The aim of the Insubria Biobank is to become an ethical subject to secure the public trust and to define the ethics criteria to be made public and to which the biobank will comply. In our model we propose the prospective involved parties that could guarantee the achievement of this goal: Informed Consent, Charter of Principles and Biobank Ethics Consultation Services (BECS). Our purpose is to offer a Charter of Principles and BECS to help scientists, health care professionals, patients, donors, institutional review board and policymakers, better navigate the ethical issues in biobanking. An exploratory survey to identify the willingness to use BECS represent our future research plan.
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Newton, Jade C., Harry Hohnen, Claire E. Johnson, Angela Ives, Sandy McKiernan, Violet Platt, Christobel Saunders, and Neli Slavova-Azmanova. "'…If I don't have that sort of money again, what happens?': adapting a qualitative model to conceptualise the consequences of out-of-pocket expenses for cancer patients in mixed health systems." Australian Health Review 44, no. 3 (2020): 355. http://dx.doi.org/10.1071/ah18250.
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ObjectiveThe aim of this study was to explore Western Australian cancer patients’ experiences of out-of-pocket expenses (OOPE) during diagnosis and cancer treatment using a phenomenological approach. MethodsSemi-structured interviews were conducted with a purposive convenience sample of 40 Western Australian cancer patients diagnosed with breast, lung, prostate or colorectal cancer. Participants were asked about the impact of their diagnosis, the associated costs and their experience within the health system. Data were analysed using thematic content analysis. ResultsThree key themes influencing participant OOPE experiences were identified: (1) personal circumstances; (2) communication with health providers; and (3) coping strategies. Despite Australia’s public healthcare system, several participants found the costs affected their financial security and resorted to coping strategies including medication rationing and restrictive household budgeting. The key themes had a complex and interrelated effect on patient OOPE experiences and were used to adapt Carrera et al.’s model of economic consequences of cancer treatment on the patient and patient coping to describe these relationships in a mixed healthcare system. ConclusionOrganised efforts must be implemented to mitigate maladaptive coping strategies being used by cancer patients: (1) health providers should seek informed financial consent from patients before commencing treatment; and (2) financial aid and support schemes for cancer patients should be reviewed to ensure they are delivered equitably. What is known on this topic?The financial cost of cancer can have significant adverse effects on cancer patients. Although financial transparency is desired by cancer patients, its implementation in practice is not clear. What does this paper add?This study adapts a conceptual model for the economic consequences of a cancer diagnosis and repurposes it for a mixed public–private health system, providing a framework for understanding downstream consequences of cancer costs and highlighting opportunities for intervention. What are the implications for health practitioners?Health practitioners need to initiate discussions concerning treatment costs earlier with cancer patients. There are several resources and guides available to assist and facilitate financial transparency. Without urgent attention to the financial consequences of cancer treatment and related expenses, we continue to leave patients at risk of resorting to maladaptive coping strategies, such as medication rationing and restrictive household budgeting.
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Martinez-Martin, Nicole, Henry T. Greely, and Mildred K. Cho. "Ethical Development of Digital Phenotyping Tools for Mental Health Applications: Delphi Study." JMIR mHealth and uHealth 9, no. 7 (July 28, 2021): e27343. http://dx.doi.org/10.2196/27343.
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Background Digital phenotyping (also known as personal sensing, intelligent sensing, or body computing) involves the collection of biometric and personal data in situ from digital devices, such as smartphones, wearables, or social media, to measure behavior or other health indicators. The collected data are analyzed to generate moment-by-moment quantification of a person’s mental state and potentially predict future mental states. Digital phenotyping projects incorporate data from multiple sources, such as electronic health records, biometric scans, or genetic testing. As digital phenotyping tools can be used to study and predict behavior, they are of increasing interest for a range of consumer, government, and health care applications. In clinical care, digital phenotyping is expected to improve mental health diagnoses and treatment. At the same time, mental health applications of digital phenotyping present significant areas of ethical concern, particularly in terms of privacy and data protection, consent, bias, and accountability. Objective This study aims to develop consensus statements regarding key areas of ethical guidance for mental health applications of digital phenotyping in the United States. Methods We used a modified Delphi technique to identify the emerging ethical challenges posed by digital phenotyping for mental health applications and to formulate guidance for addressing these challenges. Experts in digital phenotyping, data science, mental health, law, and ethics participated as panelists in the study. The panel arrived at consensus recommendations through an iterative process involving interviews and surveys. The panelists focused primarily on clinical applications for digital phenotyping for mental health but also included recommendations regarding transparency and data protection to address potential areas of misuse of digital phenotyping data outside of the health care domain. Results The findings of this study showed strong agreement related to these ethical issues in the development of mental health applications of digital phenotyping: privacy, transparency, consent, accountability, and fairness. Consensus regarding the recommendation statements was strongest when the guidance was stated broadly enough to accommodate a range of potential applications. The privacy and data protection issues that the Delphi participants found particularly critical to address related to the perceived inadequacies of current regulations and frameworks for protecting sensitive personal information and the potential for sale and analysis of personal data outside of health systems. Conclusions The Delphi study found agreement on a number of ethical issues to prioritize in the development of digital phenotyping for mental health applications. The Delphi consensus statements identified general recommendations and principles regarding the ethical application of digital phenotyping to mental health. As digital phenotyping for mental health is implemented in clinical care, there remains a need for empirical research and consultation with relevant stakeholders to further understand and address relevant ethical issues.
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Mudgal, Keshav Shree, and Neelanjan Das. "The ethical adoption of artificial intelligence in radiology." BJR|Open 2, no. 1 (November 1, 2020): 20190020. http://dx.doi.org/10.1259/bjro.20190020.
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Artificial intelligence (AI) is rapidly transforming healthcare—with radiology at the pioneering forefront. To be trustfully adopted, AI needs to be lawful, ethical and robust. This article covers the different aspects of a safe and sustainable deployment of AI in radiology during: training, integration and regulation. For training, data must be appropriately valued, and deals with AI companies must be centralized. Companies must clearly define anonymization and consent, and patients must be well-informed about their data usage. Data fed into algorithms must be made AI-ready by refining, purification, digitization and centralization. Finally, data must represent various demographics. AI needs to be safely integrated with radiologists-in-the-loop: guiding forming concepts of AI solutions and supervising training and feedback. To be well-regulated, AI systems must be approved by a health authority and agreements must be made upon liability for errors, roles of supervised and unsupervised AI and fair workforce distribution (between AI and radiologists), with a renewal of policy at regular intervals. Any errors made must have a root-cause analysis, with outcomes fedback to companies to close the loop—thus enabling a dynamic best prediction system. In the distant future, AI may act autonomously with little human supervision. Ethical training and integration can ensure a "transparent" technology that will allow insight: helping us reflect on our current understanding of imaging interpretation and fill knowledge gaps, eventually moulding radiological practice. This article proposes recommendations for ethical practise that can guide a nationalized framework to build a sustainable and transparent system.
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Brody, Howard. "Transparency: Informed Consent in Primary Care." Hastings Center Report 19, no. 5 (September 1989): 5. http://dx.doi.org/10.2307/3562634.
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Yazici, Yusuf, and Hasan Yazici. "Informed consent: time for more transparency." Arthritis Research & Therapy 12, no. 3 (2010): 121. http://dx.doi.org/10.1186/ar3004.
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Tugwell, Peter, and J. Andre Knottnerus. "Need for greater transparency in documenting informed consent." Journal of Clinical Epidemiology 109 (May 2019): v—vii. http://dx.doi.org/10.1016/j.jclinepi.2019.04.004.
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Benchoufi, Mehdi, Raphael Porcher, and Philippe Ravaud. "Blockchain protocols in clinical trials: Transparency and traceability of consent." F1000Research 6 (January 23, 2017): 66. http://dx.doi.org/10.12688/f1000research.10531.1.
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Clinical trial consent for protocols and their revisions should be transparent for patients and traceable for stakeholders. Our goal is to implement a process allowing the collection of patients’ informed consent, which is bound to protocol revisions, storing and tracking the consent in a secure, unfalsifiable and publicly verifiable way, and enabling the sharing of this information in real time. For that, we will built a consent workflow using a rising technology called Blockchain. This is a distributed technology that brings a built-in layer of transparency and traceability. Additionally, it removes the need for third parties, and gives participative control to the peer-to-peer users. From a more general and prospective point of view, we believe Blockchain technology brings a paradigmatical shift to the entire clinical research field. We designed a Proof-of-Concept protocol consisting of time-stamping each step of the patient’s consent collection using Blockchain; thus archiving and historicising the consent through cryptographic validation in a securely unfalsifiable and transparent way. For each revision of the protocol, consent was sought again. We obtained a single document, in a standard open format, that accounted for the whole consent collection process: timestamped consent status with regards to each version of the protocol. This document cannot be corrupted, and can be checked on any dedicated public website. It should be considered as a robust proof of data. In the future, we think that the complex data flow of a clinical trial can be tracked using Blockchain. Moreover, a blockchain core functionality, named Smart Contract, can help prevent clinical trial events not to happen in the right chronological order: including patients before they consented or analysing case report forms data before freezing the database. This will help reaching reliability, security, and transparency, and could be a consistent step towards reproducibility.
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Benchoufi, Mehdi, Raphael Porcher, and Philippe Ravaud. "Blockchain protocols in clinical trials: Transparency and traceability of consent." F1000Research 6 (April 27, 2017): 66. http://dx.doi.org/10.12688/f1000research.10531.2.
Full textAbstract:
Clinical trial consent for protocols and their revisions should be transparent for patients and traceable for stakeholders. Our goal is to implement a process allowing the collection of patients’ informed consent, which is bound to protocol revisions, storing and tracking the consent in a secure, unfalsifiable and publicly verifiable way, and enabling the sharing of this information in real time. For that, we will built a consent workflow using a rising technology called Blockchain. This is a distributed technology that brings a built-in layer of transparency and traceability. Additionally, it removes the need for third parties, and gives participative control to the peer-to-peer users. From a more general and prospective point of view, we believe Blockchain technology brings a paradigmatical shift to the entire clinical research field. We designed a Proof-of-Concept protocol consisting of time-stamping each step of the patient’s consent collection using Blockchain; thus archiving and historicising the consent through cryptographic validation in a securely unfalsifiable and transparent way. For each revision of the protocol, consent was sought again. We obtained a single document, in a standard open format, that accounted for the whole consent collection process: timestamped consent status with regards to each version of the protocol. This document cannot be corrupted, and can be checked on any dedicated public website. It should be considered as a robust proof of data. In the future, we think that the complex data flow of a clinical trial can be tracked using Blockchain. Moreover, a blockchain core functionality, named Smart Contract, can help prevent clinical trial events not to happen in the right chronological order: including patients before they consented or analysing case report forms data before freezing the database. This will help reaching reliability, security, and transparency, and could be a consistent step towards reproducibility.
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Benchoufi, Mehdi, Raphael Porcher, and Philippe Ravaud. "Blockchain protocols in clinical trials: Transparency and traceability of consent." F1000Research 6 (December 8, 2017): 66. http://dx.doi.org/10.12688/f1000research.10531.4.
Full textAbstract:
Clinical trial consent for protocols and their revisions should be transparent for patients and traceable for stakeholders. Our goal is to implement a process allowing for collection of patients’ informed consent, which is bound to protocol revisions, storing and tracking the consent in a secure, unfalsifiable and publicly verifiable way, and enabling the sharing of this information in real time. For that, we build a consent workflow using a trending technology called Blockchain. This is a distributed technology that brings a built-in layer of transparency and traceability. From a more general and prospective point of view, we believe Blockchain technology brings a paradigmatical shift to the entire clinical research field. We designed a Proof-of-Concept protocol consisting of time-stamping each step of the patient’s consent collection using Blockchain, thus archiving and historicising the consent through cryptographic validation in a securely unfalsifiable and transparent way. For each protocol revision, consent was sought again. We obtained a single document, in an open format, that accounted for the whole consent collection process: a time-stamped consent status regarding each version of the protocol. This document cannot be corrupted and can be checked on any dedicated public website. It should be considered a robust proof of data. However, in a live clinical trial, the authentication system should be strengthened to remove the need for third parties, here trial stakeholders, and give participative control to the peer users. In the future, the complex data flow of a clinical trial could be tracked by using Blockchain, which core functionality, named Smart Contract, could help prevent clinical trial events not occurring in the correct chronological order, for example including patients before they consented or analysing case report form data before freezing the database. Globally, Blockchain could help with reliability, security, transparency and could be a consistent step toward reproducibility.
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Benchoufi, Mehdi, Raphael Porcher, and Philippe Ravaud. "Blockchain protocols in clinical trials: Transparency and traceability of consent." F1000Research 6 (February 1, 2018): 66. http://dx.doi.org/10.12688/f1000research.10531.5.
Full textAbstract:
Clinical trial consent for protocols and their revisions should be transparent for patients and traceable for stakeholders. Our goal is to implement a process allowing for collection of patients’ informed consent, which is bound to protocol revisions, storing and tracking the consent in a secure, unfalsifiable and publicly verifiable way, and enabling the sharing of this information in real time. For that, we build a consent workflow using a trending technology called Blockchain. This is a distributed technology that brings a built-in layer of transparency and traceability. From a more general and prospective point of view, we believe Blockchain technology brings a paradigmatical shift to the entire clinical research field. We designed a Proof-of-Concept protocol consisting of time-stamping each step of the patient’s consent collection using Blockchain, thus archiving and historicising the consent through cryptographic validation in a securely unfalsifiable and transparent way. For each protocol revision, consent was sought again. We obtained a single document, in an open format, that accounted for the whole consent collection process: a time-stamped consent status regarding each version of the protocol. This document cannot be corrupted and can be checked on any dedicated public website. It should be considered a robust proof of data. However, in a live clinical trial, the authentication system should be strengthened to remove the need for third parties, here trial stakeholders, and give participative control to the peer users. In the future, the complex data flow of a clinical trial could be tracked by using Blockchain, which core functionality, named Smart Contract, could help prevent clinical trial events not occurring in the correct chronological order, for example including patients before they consented or analysing case report form data before freezing the database. Globally, Blockchain could help with reliability, security, transparency and could be a consistent step toward reproducibility.
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Dheensa, Sandi, Gabrielle Samuel, Anneke M. Lucassen, and Bobbie Farsides. "Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project." Journal of Medical Ethics 44, no. 6 (March 1, 2018): 397–403. http://dx.doi.org/10.1136/medethics-2017-104588.
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Clinical practice and research are governed by distinct rules and regulations and have different approaches to, for example, consent and providing results. However, genomics is an example of where research and clinical practice have become codependent. The 100 000 genomes project (100kGP) is a hybrid venture where a person can obtain a clinical investigation only if he or she agrees to also participate in ongoing research—including research by industry and commercial companies. In this paper, which draws on 20 interviews with professional stakeholders involved in 100kGP, we investigate the ethical issues raised by this project’s hybrid nature. While some interviewees thought the hybrid nature of 100kGP was its vanguard, interviewees identified several tensions around hybrid practice: how to decide who should be able to participate; how to determine whether offering results might unduly influence participation into wide-ranging but often as yet unknown research and how to ensure that patients/families do not develop false expectations about receiving results. These areas require further debate as 100kGP moves into routine healthcare in the form of the national genomic medicine service. To address the tensions identified, we explore the appropriateness of Faden et al.’s framework of ethical obligations for when research and clinical care are completely integrated. We also argue that enabling ongoing transparent and trustworthy communication between patients/families and professionals around the kinds of research that should be permitted in 100kGP will help to understand and ensure that expectations remain realistic. Our paper aims to encourage a focused discussion about these issues and to inform a new ‘social contract’ for research and clinical care in the health service.
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Stohl, Hindi E. "When Consent Does Not Help." American Journal of Law & Medicine 43, no. 4 (November 2017): 388–425. http://dx.doi.org/10.1177/0098858817753405.
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Pregnant women with a prior cesarean delivery face challenges in accessing a vaginal birth due to both hospital and provider preferences and practices. Although the doctrine of informed consent secures women's reproductive rights, it is not a viable legal remedy. Instead, women should champion increased maternity-related education and transparency as well as medical malpractice reform to increase the desired access.
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Obar, Jonathan A. "Sunlight alone is not a disinfectant: Consent and the futility of opening Big Data black boxes (without assistance)." Big Data & Society 7, no. 1 (January 2020): 205395172093561. http://dx.doi.org/10.1177/2053951720935615.
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In our attempts to achieve privacy and reputation deliverables, advocating for service providers and other data managers to open Big Data black boxes and be more transparent about consent processes, algorithmic details, and data practice is easy. Moving from this call to meaningful forms of transparency, where the Big Data details are available, useful, and manageable is more difficult. Most challenging is moving from that difficult task of meaningful transparency to the seemingly impossible scenario of achieving, consistently and ubiquitously, meaningful forms of consent, where individuals are aware of data practices and implications, understand these realities, and agree to them as well. This commentary unpacks these concerns in the online consent context. It emphasizes that self-governance fallacy pervades current approaches to achieving digital forms of privacy, exemplified by the assertion that transparency and information access alone are enough to help individuals achieve privacy and reputation protections.
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Meijer, Albert, Paul ’t Hart, and Ben Worthy. "Assessing Government Transparency: An Interpretive Framework." Administration & Society 50, no. 4 (August 19, 2015): 501–26. http://dx.doi.org/10.1177/0095399715598341.
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How can we evaluate government transparency arrangements? While the complexity and contextuality of the values at stake defy straightforward measurement, this article provides an interpretative framework to guide and structure assessments of government transparency. In this framework, we discern criteria clusters for political transparency—democracy, the constitutional state, and social learning capacity—and for administrative transparency—economy/efficiency, integrity, and resilience. The framework provides a structured “helicopter view” of the dimensions that are relevant for a contextual assessment of transparency. An illustrative case discussion of the introduction of Freedom of Information (FOI) in the United Kingdom demonstrates its utility.
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Jhunjhunwala, Shital, and Sharvani B. "Corporate Governance Disclosure and Transparency Framework." Indian Journal of Corporate Governance 4, no. 1 (January 2011): 62–73. http://dx.doi.org/10.1177/0974686220110105.
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Bertók, János. "Lobbying: What Framework for Enhancing Transparency?" Zeitschrift für Politikberatung 2, no. 1 (April 2009): 124–32. http://dx.doi.org/10.1007/s12392-009-0076-8.
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Mayer, Benoit. "Transparency Under the Paris Rulebook: Is the Transparency Framework Truly Enhanced?" Climate Law 9, no. 1-2 (April 27, 2019): 40–64. http://dx.doi.org/10.1163/18786561-00901004.
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In December 2018, cop 24/cma 1.3 adopted the Modalities, Procedures and Guidelines for the Transparency Framework under Article 13 of the Paris Agreement. Commenting on this decision, this article reviews and assesses the rules on transparency in the unfccc regime as they will apply during the coming years. Two main themes are identified: differentiation and progression. With regard to differentiation, while the Transparency Framework seeks to apply the same rules to all countries, bifurcation remains in place in some important respects. With regard to progression, the article identifies four aspects in which the adoption of a uniform set of rules has come at the expense of the stringency of the rules applicable to Annex i parties.
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Parris, Denise Linda, Jennifer L. Dapko, Richard Wade Arnold, and Danny Arnold. "Exploring transparency: a new framework for responsible business management." Management Decision 54, no. 1 (February 8, 2016): 222–47. http://dx.doi.org/10.1108/md-07-2015-0279.
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Purpose – The purpose of this paper is to critically review the relevant literature on transparency, provide a comprehensive definition of transparency, and present a new framework for facilitating the adoption of transparency as an ethical cornerstone and pragmatic strategy for organizational responsible business management. Design/methodology/approach – A systematic literature review – a methodology adopted from medical sciences to eliminate research bias – was conducted. In doing so, the definitions, antecedents, and consequences of transparency are accessed and synthesized. Findings – Based upon this process transparency is defined as the extent to which a stakeholder perceives an organization provides learning opportunities about itself. A conceptual framework emerged from the data. It describes when transparency is especially important, what organizations can do to be more transparent, and the potential benefits of transparency. Practical implications – The transparency framework can be used as a guide for organizations attempting to change their behavior, image, and performance by adopting transparency as a value in their organization. In addition, the framework can be used to create and adopt a universal (i.e. industry-wide or even societal-wide) code of conduct. Furthermore, this review, definition, and framework provide a template for academics to advance transparency theory, and empirically test the construct’s application. Originality/value – As a new research field, transparency has lacked a concise definition as well as a conceptual framework. This is the first comprehensive summary of transparency. In addition, this study contributes to the methodology of evaluating construct definitions to advance empirical research.
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Lindblom, Lars. "Consent, Contestability, and Unions." Business Ethics Quarterly 29, no. 2 (November 15, 2018): 189–211. http://dx.doi.org/10.1017/beq.2018.25.
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ABSTRACT:This article provides a normative justification for unions. It discusses three arguments. The argument from consent justifies unions in some circumstances, but if the employer prefers to not bargain with unions, it may provide very little justification. The argument from contestability takes as its starting point the fact that employment contracts are incomplete contracts, where authority takes the place of complete contractual terms. This theory of contracts implies that consent to authority has been given under ignorance, and, therefore, that authority cannot be justified by consent. Contestability is a mechanism that can handle this problem for consent theory. It demands transparency, channels for voice, and a forum where contestations can be evaluated. This idea can be implemented in firms in different ways, but the argument from the separation of powers implies that unions are uniquely suited to implement contestability, since they are organized outside of the employer’s domain of authority.
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Manson, Neil C. "The biobank consent debate: Why ‘meta-consent’ is not the solution?" Journal of Medical Ethics 45, no. 5 (October 1, 2018): 291–94. http://dx.doi.org/10.1136/medethics-2018-105007.
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Over the past couple of decades, there has been an ongoing, often fierce, debate about the ethics of biobank participation. One central element of that debate has concerned the nature of informed consent, must specific reconsent be gained for each new use, or user, or is broad consent ethically adequate? Recently, Thomas Ploug and Søren Holm have developed an alternative to both specific and broad consent: what they call a meta-consent framework. On a meta-consent framework, participants can choose the type of consent framework they require, for different kinds of use, different types of user and so on. Meta-consent involves a distinctive kind of design of the consent process. Here it is argued, first, that although a meta-consent framework does not wrong participants, Ploug and Holm understate the likely costs and burdens of such a framework, so there are good practical reasons not to offer it. Second, although Ploug and Holm allude to some ethical considerations that might seem to ground an ethical argument for providing meta-consent, they do not offer any sound argument, and it does not wrong participants in any way to fail to offer them the opportunity to design their own consent process.
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Gastens, Viktoria, Cinzia Del Giovane, Daniela Anker, Martin Feller, Lamprini Syrogiannouli, Nathalie Schwab, Douglas C. Bauer, Nicolas Rodondi, and Arnaud Chiolero. "Development and validation of a life expectancy estimator for multimorbid older adults: a cohort study protocol." BMJ Open 11, no. 8 (August 2021): e048168. http://dx.doi.org/10.1136/bmjopen-2020-048168.
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BackgroundOlder multimorbid adults have a high risk of mortality and a short life expectancy (LE). Providing high-value care and avoiding care overuse, including of preventive care, is a serious challenge among multimorbid patients. While guidelines recommend to tailor preventive care according to the estimated LE, there is no tool to estimate LE in this specific population. Our objective is therefore to develop an LE estimator for older multimorbid adults by transforming a mortality prognostic index, which will be developed and internally validated in a prospective cohort.Methods and analysisWe will analyse data of the Optimising Therapy to Prevent Avoidable Hospital Admissions in Multimorbid Older People cohort study in Bern, Switzerland. 822 participants were included at hospitalisation with age of 70 years or older, multimorbidity (three or more chronic medical conditions) and polypharmacy (use of five drugs or more for >30 days). All-cause mortality will be assessed during 3 years of follow-up. We will apply a flexible parametric survival model with backward stepwise selection to identify the mortality risk predictors. The model will be internally validated using bootstrapping techniques. We will derive a point-based risk score from the regression coefficients. We will transform the 3-year mortality prognostic index into an LE estimator using the Gompertz survival function. We will perform a qualitative assessment of the clinical usability of the LE estimator and its application. We will conduct the development and validation of the mortality prognostic index following the Prognosis Research Strategy (PROGRESS) framework and report it following the Transparent Reporting of a Multivariable Prediction Model for Individual Prognosis or Diagnosis (TRIPOD) statement.Ethics and disseminationWritten informed consent by patients themselves or, in the case of cognitive impairment, by a legal representative, was required before enrolment. The local ethics committee (Kantonale Ethikkommission Bern) has approved the study. We plan to publish the results in peer-reviewed journals and present them at national and international conferences.
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Dranseika, Vilius, and Jan Piasecki. "Transparent Defaults and Consent for Participation in a Learning Health Care System: An Empirical Study." Journal of Empirical Research on Human Research Ethics 15, no. 4 (February 11, 2020): 261–70. http://dx.doi.org/10.1177/1556264620904272.
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We report a preregistered study that was designed to answer three questions about using transparent defaults to increase participation in a hypothetical learning health care system. Do default options influence consent to participate in learning activities within a learning health care system? Does transparency about default options decrease the effect of the defaults? Do people reconsider their choice of participation once they are informed about the defaults applied? In our study, application of the defaults did not have influence on rates of consent, nor did transparency about defaults have an effect on the rates of consent. Participants were also not likely to change their choice after being informed that defaults were applied to their previous choice. In general, our study raises doubts that defaults (both covert and transparent) can be used as an effective means in significantly increasing participation in learning health care systems.
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Barlev, Benzion, and Joshua Rene Haddad. "Information asymmetry, transparency and the conceptual framework." International Journal of Economics and Accounting 1, no. 1/2 (2010): 22. http://dx.doi.org/10.1504/ijea.2010.033899.
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Bernal Turnes, Paloma, and Ricardo Ernst. "A framework for transparency in international trade." Investigaciones Europeas de Dirección y Economía de la Empresa 21, no. 1 (January 2015): 1–8. http://dx.doi.org/10.1016/j.iedee.2014.01.001.
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Fernández, Javier D., Marta Sabou, Sabrina Kirrane, Elmar Kiesling, Fajar J. Ekaputra, Amr Azzam, and Rigo Wenning. "User consent modeling for ensuring transparency and compliance in smart cities." Personal and Ubiquitous Computing 24, no. 4 (January 14, 2020): 465–86. http://dx.doi.org/10.1007/s00779-019-01330-0.
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Viana, Giovanni Bogéa, and Maria Beatriz Felgar de Toledo. "The Brazilian Transparency Portal." International Journal of Web Portals 5, no. 3 (July 2013): 53–70. http://dx.doi.org/10.4018/ijwp.2013070104.
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One of the e-government goals is to enable public access of official information to all citizens. The diversity of the audiences may imply that the way the exposed information is understood may not be homogeneous. An evaluation of the Brazilian Transparency Portal, conducted as part of this research, has corroborated the previous assertion. This evaluation showed that the official classification may limit understanding depending on the public, because it may be unclear or not widespread. Although non-governmental agencies were satisfied with the way information was classified, regular users had several problems for finding information in the Portal. In addition, different users identified distinct classifications for the same data item. Based on these results, a framework was developed to improve the usability of the Portal. A new form of user interface adaptability called “adaptability by classification” was proposed within this framework. The novel aspect of the framework is to allow data presentation in different ways according to the classifications expected by groups of individuals with the main goal of increasing digital inclusion.
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Khan, Mohammed I., Matthew Holek, Faris Bdair, Lawrence Mbuagbaw, Sandra M. Eldridge, Claire L. Chan, Michael J. Campbell, et al. "Assessing the transparency of informed consent in feasibility and pilot studies: a single-centre quality assurance study protocol." BMJ Open 10, no. 6 (June 2020): e036226. http://dx.doi.org/10.1136/bmjopen-2019-036226.
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IntroductionPilot/feasibility studies assess the feasibility of conducting a larger study. Although researchers ought to communicate the feasibility objectives to their participants, many research ethics guidelines do not comment on how informed consent applies to pilot studies. It is unclear whether researchers and research ethics boards clearly communicate the purpose of pilot studies to participants consenting.The primary objective of this study is to assess whether pilot/feasibility studies submitted for ethics approval to a research ethics board transparently communicate the purpose of the study to participants through their informed consent practice. A highly transparent consent practice entails the consent documents communicate: (1) the term ‘pilot’ or ‘feasibility’ in the title; (2) the definition of a pilot/feasibility study; (3) the primary objectives of the study are to assess feasibility; (4) the specific feasibility objectives; and (5) the criteria for the study to successfully lead to the main study. The secondary objectives are to assess whether there is a difference between submitted and revised versions of the consent documents (revisions are made to obtain research ethics approval), to determine factors associated with transparent consent practices and to assess the consistency with which pilot and feasibility studies assess feasibility outcomes as their primary objectives.Methods and analysisThis is a retrospective review of informed consent information for pilot/feasibility studies submitted to the Hamilton integrated Research Ethics Board, Canada. We will look at submitted and revised consent documents for pilot/feasibility studies submitted over a 14-year period. We will use descriptive statistics to summarise data, reporting results as percentages with 95% CIs, and conduct logistic regression to determine characteristics associated with transparent consent practices.Ethics and disseminationThe study protocol was approved by the Hamilton integrated Research Ethics Board, and the results of this study will be submitted for publication in a peer-reviewed journal.
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Prictor, Megan, Megan A. Lewis, Ainsley J. Newson, Matilda Haas, Sachiko Baba, Hannah Kim, Minori Kokado, et al. "Dynamic Consent: An Evaluation and Reporting Framework." Journal of Empirical Research on Human Research Ethics 15, no. 3 (November 15, 2019): 175–86. http://dx.doi.org/10.1177/1556264619887073.
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Dynamic consent (DC) is an approach to consent that enables people, through an interactive digital interface, to make granular decisions about their ongoing participation. This approach has been explored within biomedical research, in fields such as biobanking and genomics, where ongoing contact is required with participants. It is posited that DC can enhance decisional autonomy and improve researcher–participant communication. Currently, there is a lack of evidence about the measurable effects of DC-based tools. This article outlines a framework for DC evaluation and reporting. The article draws upon the evidence for enhanced modes of informed consent for research as the basis for a logic model. It outlines how future evaluations of DC should be designed to maximize their quality, replicability, and relevance based on this framework. Finally, the article considers best-practice for reporting studies that assess DC, to enable future research and implementation to build upon the emerging evidence base.
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Connors, Elizabeth C., Yanna Krupnikov, and John Barry Ryan. "How Transparency Affects Survey Responses." Public Opinion Quarterly 83, S1 (2019): 185–209. http://dx.doi.org/10.1093/poq/nfz013.
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Abstract Following a shift toward greater transparency, many academic journals across a variety of disciplines now require authors to post their data. At the same time, many university Institutional Review Boards (IRBs) have followed recent US federal guidelines and now require researchers to be more transparent with survey participants regarding what will happen to the collected data. In this paper, we take the first steps toward considering the interaction between these two survey research developments. Using a nationally representative panel, we show that informing survey participants that their de-identified data will be publicly shared by a researcher can affect how these participants answer certain questions. In some cases, public posting notifications can increase data quality (e.g., knowledge measures), but in other cases informing participants of the data’s future use can exacerbate social desirability issues (e.g., turnout). Our results suggest conditional costs and benefits to the intersection between two critical ethical norms underlying survey research: data-sharing and informed consent.
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Barlev, Benzion, David B. Citron, and Joshua Rene Haddad. "Who Is Afraid of Transparency?" Accounting and the Public Interest 17, no. 1 (April 1, 2017): 60–83. http://dx.doi.org/10.2308/apin-51758.
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ABSTRACT The Conceptual Framework issued by the IASB and the FASB in 2010 excludes the concept of transparency on the grounds that it adds nothing to the existing corpus of qualitative characteristics. This paper argues that incorporating the concept of process transparency into the Conceptual Framework would provide the necessary conceptual basis for raising the status of the Management Discussion and Analysis from a non-mandatory guideline to an accounting standard. This would further the Boards' stated public interest objectives of “fostering trust, growth and long-term financial stability” by requiring disclosure of how critical accounting estimates affect reported results and, at a broader level, how and why key strategic management decisions are made. The paper derives this recommendation from a review of notions of transparency and “black box” in the public finance and management literatures. We also analyze the viewpoints expressed in comment letters to the Boards' Discussion Paper and the Exposure Draft, which preceded the Conceptual Framework. In contrast to the Boards' stance we find that most respondents who address the issue of transparency favor its inclusion in the Conceptual Framework. Finally, based on Kuhn's (1970) The Structure of Scientific Revolutions, we seek to explain the Boards' objection to the new concept. Data Availability: All data are available from public sources.
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Al-habshan, Khalid Saad. "Current Practices and Improvement of Saudi Corporate Governance Framework." Journal of Politics and Law 10, no. 4 (August 30, 2017): 81. http://dx.doi.org/10.5539/jpl.v10n4p81.
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The preceding article described the notions of disclosure and transparency and their purpose and importance in practice. An understanding of the requirements and elements of the practice of disclosure leads to a discussion of its benefits and advantages, as well as the consequences of a lack of transparency during financial scandals. The Saudi approach to disclosure and transparency is also examined based on the evidence given in board annual reports. This paper highlights the way the Saudi legal system evaluates corporate governance and its legal basis.
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Ballantyne, Angela, and G. Owen Schaefer. "Consent and the ethical duty to participate in health data research." Journal of Medical Ethics 44, no. 6 (January 22, 2018): 392–96. http://dx.doi.org/10.1136/medethics-2017-104550.
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The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As such, for some studies the Institutional Review Board/Research Ethics Committee review process should not assess the practicality of gaining consent for data use. Instead the review process should focus on assessing the public good of the research, public engagement and transparency.
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Ismail, Umar, Shareeful Islam, Moussa Ouedraogo, and Edgar Weippl. "A Framework for Security Transparency in Cloud Computing." Future Internet 8, no. 1 (February 17, 2016): 5. http://dx.doi.org/10.3390/fi8010005.
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