Dataset Information

Visualizing an Ethics Framework: A Method to Create Interactive Knowledge Visualizations From Health Policy Documents.

ABSTRACT: BACKGROUND:Data have become an essential factor in driving health research and are key to the development of personalized and precision medicine. Primary and secondary use of personal data holds significant potential for research; however, it also introduces a new set of challenges around consent processes, privacy, and data sharing. Research institutions have issued ethical guidelines to address challenges and ensure responsible data processing and data sharing. However, ethical guidelines directed at researchers and medical professionals are often complex; require readers who are familiar with specific terminology; and can be hard to understand for people without sufficient background knowledge in legislation, research, and data processing practices. OBJECTIVE:This study aimed to visually represent an ethics framework to make its content more accessible to its stakeholders. More generally, we wanted to explore the potential of visualizing policy documents to combat and prevent research misconduct by improving the capacity of actors in health research to handle data responsibly. METHODS:We used a mixed methods approach based on knowledge visualization with 3 sequential steps: qualitative content analysis (open and axial coding, among others); visualizing the knowledge structure, which resulted from the previous step; and adding interactive functionality to access information using rapid prototyping. RESULTS:Through our iterative methodology, we developed a tool that allows users to explore an ethics framework for data sharing through an interactive visualization. Our results represent an approach that can make policy documents easier to understand and, therefore, more applicable in practice. CONCLUSIONS:Meaningful communication and understanding each other remain a challenge in various areas of health care and medicine. We contribute to advancing communication practices through the introduction of knowledge visualization to bioethics to offer a novel way to tackle this relevant issue.

SUBMITTER: Sleigh J

PROVIDER: S-EPMC6996733 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Visualizing an Ethics Framework: A Method to Create Interactive Knowledge Visualizations From Health Policy Documents.

Sleigh Joanna J Schneider Manuel M Amann Julia J Vayena Effy E

Journal of medical Internet research 20200114 1

<h4>Background</h4>Data have become an essential factor in driving health research and are key to the development of personalized and precision medicine. Primary and secondary use of personal data holds significant potential for research; however, it also introduces a new set of challenges around consent processes, privacy, and data sharing. Research institutions have issued ethical guidelines to address challenges and ensure responsible data processing and data sharing. However, ethical guideli ...[more]

PMID: 31934866

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Project description:The Sustainable Development Goals (SDGs) and the United Nations Global Strategy (2016-30) emphasize that all women, children and adolescents 'survive, thrive and transform'. A key element of this global policy framework is that gender equality is a stand-alone goal as well as a cross-cutting priority. Gender inequality and intersecting social and structural determinants shape health systems, including the content of policy documents, with implications for implementation. This article applies a gender lens to policy documents by national government bodies that have mandates on adolescent health in South Africa. Data were 15 policy documents, authored between 2003 and 2018, by multiple actors. The content analysis was guided by key lines of enquiry, and policy documents were classified along the continuum of gender blind to gender transformative. Only three policy documents defined gender, and if gender was addressed, it was mostly in gender-sensitive ways, at times gender specific, but rarely gender transformative. Building on this, a critical discourse analysis identified what is problematized and what is left unproblematized by actors, identifying the key interrelated dominant and marginalized discourses, as well as the 'silences' embedded in policy documents. The discourse analysis revealed that dominant and marginalized discourses reflect how gender is conceptualized as fixed, categorical identities, vs as fluid social processes, with implications for how rights and risks are understood. The discourses substantiate an over-riding focus on adolescent girls, outside of the context of power relations, with minimal attention to boys in terms of their own health or through a gender lens, as well as little consideration of LGBTIQ+ adolescents beyond HIV. Dynamic and complex relationships exist between the South Africa context, actors, content and processes, in shaping both how gender is problematized and how 'solutions' are represented in these policies. How gender is conceptualized matters, both for policy analysis and for praxis, and policy documents can be part of foundations for transforming gender and intersecting power relations.

Project description:OBJECTIVE:The general purpose for ethics consultations is to deliberate on issues on medical and scientific research and act towards the safeguard of the patient's rights and dignity. With the implementation of European Union (EU) Regulation 536/2014 on clinical trials and cost and time-optimization, the nature of consultations and the bodies they are carried out might be to some extent affected. Accordingly, we sought to gain an updated perspective on the current role and current practices of ethics consultations nationwide in both clinical and research settings. METHODS:The study was carried forth by a three-step mixed-method approach: i) review of policies/regulations for ethics committee (EC) nationwide; ii) a structured survey on ethics consultation activity completed by each EC during 2016; iii) incorporated into the third part, a qualitative assessment with a selected sample of 8 key-informants for a semi-structured interview, discussing EC history, the ethics consultation function, and the professional experience of consultants. RESULTS:Review of the policies/regulations promoted by ECs showed that 72,6% (n = 69) of all the ECs (N = 95) being actually capable of providing ethics consultation service by policy. 71 ECs (74.7%) responded to the survey on ethics consultation requests; among them, 48 (67.6%) provided ethics consultations of which 23 (23/48) actually received requests for this service in the year 2016. Many ECs did not have a structured database in place to provide precise figures of requests received in the last year nor of their contents. CONCLUSION:To date, ethics consultation in clinical and research practice is largely underappreciated and not well understood by users. The consultants themselves lack a comprehensive vision of work carried out in their field, and bioethics training programs to keep them updated. Despite clinical ethics consultation services should not necessarily be mandatory, following the recent EU Regulation on clinical trials, institutional ethics consultation bodies should be re-evaluated.

Dataset Information

Visualizing an Ethics Framework: A Method to Create Interactive Knowledge Visualizations From Health Policy Documents.

Publications

Visualizing an Ethics Framework: A Method to Create Interactive Knowledge Visualizations From Health Policy Documents.

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