Public trust is paramount for the well functioning of data driven healthcare activities such as digital health interventions, contact tracing or the build-up of electronic health records. As the use of personal data is the common denominator for these healthcare activities, healthcare actors have an interest to ensure privacy and anonymity of the personal data they depend on. Maintaining privacy and anonymity of personal data contribute to the trustworthiness of these healthcare activities and are associated with the public willingness to trust these activities with their personal data. An analysis of online news readership comments about the failed care.data programme in England revealed that parts of the public have a false understanding of anonymity in the context of privacy protection of personal data as used for healthcare management and medical research. Some of those commenting demanded complete anonymity of their data to be willing to trust the process of data collection and analysis. As this demand is impossible to fulfil and trust is built on a false understanding of anonymity, the inability to meet this demand risks undermining public trust. Since public concerns about anonymity and privacy of personal data appear to be increasing, a large-scale information campaign about the limits and possibilities of anonymity with respect to the various uses of personal health data is urgently needed to help the public to make better informed choices about providing personal data.
Biobanks act as the custodians for the access to and responsible use of human biological samples and related data that have been generously donated by individuals to serve the public interest and scientific advances in the health research realm. Risk assessment has become a daily practice for biobanks and has been discussed from different perspectives. This paper aims to provide a literature review on risk assessment in order to put together a comprehensive typology of diverse risks biobanks could potentially face. Methodologically set as a typology, the conceptual approach used in this paper is based on the interdisciplinary analysis of scientific literature, the relevant ethical and legal instruments and practices in biobanking to identify how risks are assessed, considered and mitigated. Through an interdisciplinary mapping exercise, we have produced a typology of potential risks in biobanking, taking into consideration the perspectives of different stakeholders, such as institutional actors and publics, including participants and representative organizations. With this approach, we have identified the following risk types: economic, infrastructural, institutional, research community risks and participant’s risks. The paper concludes by highlighting the necessity of an adaptive risk governance as an integral part of good governance in biobanking. In this regard, it contributes to sustainability in biobanking by assisting in the design of relevant risk management practices, where they are not already in place or require an update. The typology is intended to be useful from the early stages of establishing such a complex and multileveled biomedical infrastructure as well as to provide a catalogue of risks for improving the risk management practices already in place.
As with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention. This paper addresses the ethical considerations that research teams must consider when using participatory methods and/or when working with industry and outlines a novel informed consent matrix designed to maintain the high ethical standard to which academic research in the healthcare arena has traditionally adhered.
Objective The use of nanotechnologies is important to reduce environmental health problems in Iran, so the present study was conducted to determine the effectiveness of nanotechnologies in environmental health. This is a cross-sectional descriptive study for 11-year periods (2008–2018) on all articles published in three specialized journals of environmental health with emphasis on the use of nanotechnologies in various fields of environmental health (water, air, sewage, waste, food, radiation, etc). Results In this study, 774 articles related to 114 issues of 3 specialized environmental health journals were reviewed. A review of 774 articles showed that 80 articles (10.3%) were published in the field of nanotechnologies. Out of 80 articles published in the field of nanotechnology, 66 articles (82.5%) were published on the subject of water, 9 articles (11.3%) on wastewater and 5 articles (6.2%) on air pollution. Subject review of articles showed that articles using carbon nanotubes to remove natural organic pollutants, surfactants, hydroxybenzenes, phenol, dimethyl phthalates, use of titanium dioxide nanoparticles, iron-magnesium nanoparticles for wastewater treatment, Silver nanoparticles were used to remove air pollution. The results showed that published articles on nanotechnology in the field of environmental health were few.
Anticipating the ethical impact of emerging technologies is an essential part of responsible innovation. One such emergent technology is the digital twin which we define here as a living replica of a physical system (human or non-human). A digital twin combines various emerging technologies such as AI, Internet of Things, big data and robotics, each component bringing its own socio-ethical issues to the resulting artefacts. The question thus arises which of these socio-ethical themes surface in the process and how they are perceived by stakeholders in the field. In this report we present the results of a qualitative study into the socio-ethical benefits and socio-ethical risks of using digital twins in healthcare. Employing insights from ethics of technology and the Quadruple Helix theory of innovation, we conducted desk research of white literature and 23 interviews with representatives from the four helixes: industry, research, policy and civil society. The ethical scan revealed several important areas where the digital twin can produce socio-ethical value (e.g., prevention and treatment of disease, cost reduction, patient autonomy and freedom, equal treatment) but also several important areas of socio-ethical risks (e.g., privacy and property of data, disruption of existing societal structures, inequality and injustice). We conclude with a reflection on the employed analytical tool and suggestions for further research.
