Empowerment, an already central concept in public health, has gained additional relevance through the expansion of mobile health (mHealth). Especially direct-to-consumer self-testing app companies mobilise the term to advertise their products, which allow users to self-test for various medical conditions independent of healthcare professionals. This article first demonstrates the absence of empowerment conceptualisations in the context of self-testing apps by engaging with empowerment literature. It then contrasts the service these apps provide with two widely cited empowerment definitions by the WHO, which describe the term as a process that, broadly, leads to knowledge and control of health decisions. We conclude that self-testing apps can only partly empower their users, as they, we argue, do not provide the type of knowledge and control the WHO definitions describe. More importantly, we observe that this shortcoming stems from the fact that in the literature on mHealth and in self-testing marketing, empowerment is understood as a goal rather than a process. This characterises a shift in the meaning of empowerment in the context of self-testing and mHealth, one that reveals a lack of awareness for relational and contextual factors that contribute to empowerment. We argue that returning to a process-understanding of empowerment helps to identify these apps’ deficits, and we conclude the article by briefly suggesting several strategies to increase self-testing apps’ empowerment function.

Empowerment inom hälsa, idéen att ge människor möjlighet till mer kontroll över beslut kopplade till deras hälsa, har varit ett omtalat begrepp inom vårdorganisationer och har nyligen blivit ännu mer uppmärksammat genom det ökade intresset för mobilhälsa (mHealth). En typ av mobilhälsa är självtest-appar, vilka erbjuder användare att själva testa sig för medicinska tillstånd så pass allvarliga som demens eller Parkinsons sjukdom. Att tillhandahålla möjligheten för användare att genomföra ett sådant test oberoende av professionell vårdpersonal har marknadsförts som empowering. Det är dock inte tydligt hur informationen som självtest-appar tillhandahåller stärker användarnas empowerment. Det här problemet knyter an till den begreppsliga osäkerheten kring begreppet empowerment, vilken kan göra att felaktiga förväntningar uppstår. I den här avhandlingen använder jag en kombination av teoretisk analys och kvalitativa metoder för att kritiskt undersöka självtest-appar i relation till nutida narrativ kring empowerment inom hälsa. För att göra det använder jag exemplet CogniCheck, en självtest-app för kognitiva förändringar som indikerar mild neurokognitiv svikt eller demens. Teorier i teknikfilosofi och feministiska teknik- och vetenskapsstudier (STS) förklarar hur CogniCheck förmedlar narrativ kring empowerment, kulturella föreställningar om demens, och medicinska uppmaningar till tidig testning. Jag undersöker dessa förmedlade budskap i deras relation till empowerment med avstamp i en feministisk begreppsbildning av subjektivitet och visar hur dess nyckeldimensioner, det vill säga relationalitet, förkroppsligande, affekt och intersektionalitet, strukturerar upplevelsen av självtestning och den typ av empowerment som det ger. Utifrån dessa insikter om subjektivitet och teknik, föreslår jag ett feministiskt, fenomenologiskt grepp om empowerment inom hälsa i kontexten av självtest-appar.  

While the value of early detection of dementia is largely agreed upon, population-based screening as a means of early detection is controversial. This controversial status means that such screening is not recommended in most national dementia plans. Some current practices, however, resemble screening but are labelled “case-finding” or “detection of cognitive impairment”. Labelled as such, they may avoid the ethical scrutiny that population-based screening may be subject to. This article examines conceptualizations of screening and case-finding. It shows how the definitions and delimitations of the concepts (the what of screening) are drawn into the ethical, political, and practical dimensions that screening assessment criteria or principles are intended to clarify and control (the how of screening, how it is and how it should be performed). As a result, different conceptualizations of screening provide the opportunity to rethink what ethical assessments should take place: the conceptualizations have different ethico-political implications. The article argues that population-based systematic screening, population-based opportunistic screening, and case-finding should be clearly distinguished.

Ethical, legal and societal implications (ELSI) in the development of wearable robots (WRs) are currently not explicitly addressed in most guidelines for WR developers. Previous work has identified ELSI related to WRs, e.g., impacts on body and identity, ableism, data protection, control and responsibilities, but translation of these concerns into actionable recommendations remains outstanding. This paper provides practical guidance for the implementation of ELSI in WR design, development and use. First, we identify the need for domain-specific recommendations against the context of current ELSI guidance. We then demonstrate the feasibility and usefulness of taking a domain-specific approach by successively transforming currently identified ELSI into an action-guiding flowchart for integration of ELSI specific to the different stages of WR development. This flowchart identifies specific questions to be considered by WR development teams and suggests actions to be taken in response. By tailoring ELSI guidance to WR developers, centring it on user needs, their relation to others and wider society, and being cognizant of existing legislation and values, we hope to help the community develop better WRs that are safer, have greater usability, and which impact positively on society.

Wearable robots and exoskeletons are relatively new technologies designed for assisting and augmenting human motor functions. Due to their different possible design applications and their intimate connection to the human body, they come with specific ethical, legal, and social issues (ELS), which have not been much explored in the recent ELS literature. This paper draws on expert consultations and a literature review to provide a taxonomy of the most important ethical, legal, and social issues of wearable robots. These issues are categorized in (1) wearable robots and the self, (2) wearable robots and the other, and (3) wearable robots in society.

The COST Action on Wearable Robots (CA16116) brings together a multidisciplinary, cross-European consortium of experts in Wearable Robotics. Ethical, legal and social (ELS) issues in Wearable Robotics have so far been comparatively underexplored. The ELS Working Group of CA16116 aims to develop a comprehensive understanding of ELS issues in Wearable Robotics, identifying relevant values and ethical, philosophical, legal and social concerns related to the design, deployment and practical use of wearable robots. Here, we present a brief overview of the preliminary findings of a literature search and a series of three expert consultation workshops on ELS issues in Wearable Robotics conducted as part of the work of the Action between October 2017 and October 2018.

Recently, several research projects in the Netherlands have focused on the development of wearable robotic exoskeletons (WREs) for individuals with Duchenne muscular dystrophy (DMD). Such research on WREs is often treated solely within the disciplines of biomedical and mechanical engineering, overlooking insights from disability studies and philosophy of technology. We argue that mainly two such insights should receive attention: the problematization of the ableism connected to the individual model of disability and the stigmatization by assistive technology. While disability studies have largely rejected the individual model of disability, the engineering sciences seem to still locate disability in an individual’s body, not questioning their own problematization of disability. Additionally, philosophy of technology has argued that technologies are not neutral instruments but shape users’ actions and perceptions. The design of WREs may convey a message about the understanding of disability, which can be comprehended as a challenge and an opportunity: stigmatization needs to be avoided and positive views on disability can be evoked. This article aims to highlight the benefits of considering these socio-philosophical perspectives by examining the case of WREs for people with DMD and proposing design principles for WREs. These principles may enhance acceptability of WREs, not only by individuals with DMD but also by other users, and help engineers to better place their work in the social context.

This report presents a comprehensive proposal for a common ethics assessment framework for research and innovation (R&I) in the European Union member states. It details recommendations for good practices for ethics assessment, which includes the development of ethics assessment units and the protocols of these units. More specifically, the report presents a general toolkit for ethics assessment of R&I, as well as specialised tools and toolkits for specific types of organizations that deal with ethics assessment, and for different scientific fields. In addition, the report offers recommendations for the general institutional structure of ethics assessment in the EU and its member states. Due to the length of this report, a summary of its findings and recommendations is available. There are also several annexes that expand on particular sections of the report. These a nnexes are also available on the website of the SATORI project.

In chapter 2, we analyse the stakeholders’ expectations about the intended outcome of the SATORI project: a shared European framework for ethics assessment of R&I. This analysis is based on 153 interviews with different kind s of stakeholders, including both et hics assessors and non - assessors. Both benefits and obstacles were identified and are listed in this chapter. Furthermore, three main challenges are identified: the differences in ethics/values, the need for stakeholder buy - in, and the need for the ethics assessment framework to be a long - term process. Nonetheless, it is found that a significant majority of interviewees were positive or conditionally positive towards the desirability of a common approach to ethics assessment in R&I.

In chapter 3, we propose a framework of ethical issues and principles, which are applicable to a broad array of types of scientific R&I. The research areas discussed in depth are the natural sciences, the engineering sciences, and the medical and life sciences, information and communication technology (ICT), Internet research, the social sciences, and the humanities. It provides a basis of ethical issues and principles that apply to all types of research. It also specifies the principles and issues that apply to specific research contexts. This chapter also includes a section on how potential conflicts between ethical principles may be resolved.

In chapter 4, we outline recommendations for best practice in Ethics Assessment Units (EAUs). These recommendations are structured around a series of parameters common to all EAUs that review R&I activity. These parameters include the appropriate composition of an EAU, the appointment, training, and expertise of its members, the procedures for performing assessment, and how to assess the quality and efficiency of the EAU’s work. The cultural and organisational factors that may affect the work of an EAU are also briefly considered. The chapter concludes with a summary of the recommendations presented within it.

In chapter 5, we offer a short overview of the Common Framework for Ethical Impact Assessment (EIA) that is described further in Annex 1. This chapter can be used by governance bodies to set up new regulations with regard to ethics assessment in R&I , research funding organisations to set up new procedures for conducting EIAs in the projects they fund , and by local research organisations and companies for establishing internal procedures for conducting an EIA of the R&I projects they organise.

In section 6, we present recommendations for specialised forms of ethics assessment and guidance. Specifically, we outline standards, tools and best practices for (1) policy - oriented assessment and guidance of new developments and practices in R&I (with a focus on governmental organisations, national ethics committees, and civil society organisations); (2) guiding, assessing and supporting ethical professional behaviour by scientists and innovators; an d (3) the ethics assessment of innovation and technology development plans.

In chapter 7, we discuss ethics assessment (EA) and ethics guidance (EG) in the context of four specific types of organisation: universities, civil society organisations, industry and research funding organisations.

In chapter 8, we outline proposals for the institutional structure of ethics assessment in eight types of organisations that perform ethics assessment in the EU member states: universities, national science academies, RFOs, RECs, NECs, academic and professional organisations, CSOs, and companies. In addition, we present recommendations for the institutionalisation of ethics assessment in selected European countries.

I n chapter 9, we assess the compatibility of existing ethics assessment frameworks with the SATORI framework. This covers international regulations and guidelines as well as the approaches to ethics assessment in the United States and China.

Finally, in chapter 10, we present a summary of the recommendations contained in this report, and conclude in chapter 11 with a list of the annexes to this report.