Consent as a compositional act - a framework that provides clarity for the retention and use of data.

BACKGROUND: Informed consent is one of the key principles of conducting research involving humans. When research participants give consent, they perform an act in which they utter, write or otherwise provide an authorisation to somebody to do something. This paper proposes a new understanding of the informed consent as a compositional act. This conceptualisation departs from a modular conceptualisation of informed consent procedures. METHODS: This paper is a conceptual analysis that explores what consent is and what it does or does not do. It presents a framework that explores the basic elements of consent and breaks it down into its component parts. It analyses the consent act by first identifying its basic elements, namely: a) data subjects or legal representative that provides the authorisation of consent; b) a specific thing that is being consented to; and c) specific agent(s) to whom the consent is given. RESULTS: This paper presents a framework that explores the basic elements of consent and breaks it down into its component parts. It goes beyond only providing choices to potential research participants; it explains the rationale of those choices or consenting acts that are taking place when speaking or writing an authorisation to do something to somebody. CONCLUSIONS: We argue that by clearly differentiating the goals, the procedures of implementation, and what is being done or undone when one consent, one can better face the challenges of contemporary data-intensive biomedical research, particularly regarding the retention and use of data. Conceptualising consent as a compositional act enhances more efficient communication and accountability and, therefore, could enable more trustworthy acts of consent in biomedical science.

Citizens' views on sharing their health data: the role of competence, reliability and pursuing the common good.

BACKGROUND: In this article, we address questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted by the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public regarding predictive oncology, genetic sequencing, and cancer. METHODS: This paper presents the results of a citizen forum that included 73 participants. A research tool titled "the mechanics of consent" was designed for this study. This tool is a table encouraging participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants' discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis. RESULTS: The results are a compilation of responses from the mechanics of consent tool divided into two sections; the first presents quantitative results of collective responses regarding attitudes to consent to donate their data. The second section present qualitative findings emerged from the discussion amongst participants. DISCUSSION: Choice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits; who will be accessing and using their data; as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, by acting in a competent, reliable, and honest manner. Governance systems ought to be better equipped to address ethical issues raise by the growing presence of non-traditional research actors, consent of exchanges of data via digital devices and online activity such as social media and fairness of data trading. Finally, informed consent is one of the various elements that contribute to conducting ethical research. More needs to be done to strengthen governance and ensure adequate protection of research participants, particularly to address issues related to predictive health analytics.

Critical success factors for the implementation and adoption of e-learning for junior health care workers in Dadaab refugee camp Kenya.

This paper presents the results of a case study that analyses the critical factors that influence the implementation of professional health education via blended learning in Dadaab refugee camp. It explores innovative solutions to the issues facing refugees looking for professional health training, namely the health workforce shortage and lack of training opportunities. It outlines social and political factors that impact professional health education for refugee youth. It outlines barriers and facilitators on the implementation of 'Distance Basic Training of Healthcare Professionals', a blended training course provided by the University of Geneva to junior health care personnel in Dadaab Refugee camp. METHODS: This case uses mixed methods. Descriptive statistics drawn from online surveys, learning analytics data, and exchanges on online forums and student chat groups are all used. Qualitative methods consist of two focus groups, comprising of all students (n = 27) were convened, as well as, individual semi-structured interviews with 14 of the 27 students; three with managers from the health service who supervised enrolled students; and two with senior managers who were responsible for staff and training decision-making. Qualitative data was transcribed, and thematic analyses were applied. RESULTS: The results demonstrate that barriers for the implementation of professional education in a refugee camp emerged not only from the constraints on the environment, but also from barriers stemming from legislation and administrative procedures. Data suggested weaknesses on the education system could be addressed by providing students with extra-curricular support, information and communications technology (ICT) literacy, and promoting mechanisms for peer support while broadening entry requirements to increase the enrolment of female students. Finally, providing internationally credentialed courses and transferable skills enables professional pathways for refugee students. DISCUSSION: Blended learning enables the design and delivery of high-quality medical education that is sustainable and relevant in a particular environment, e.g. refugee camps. Furthermore, the research reveals that building education pathways could enhance numbers of health workers with the appropriate skillset to serve communities.