ABSTRACT
We propose a step-by-step methodological framework of translational bioethics that aims at changing medical practice according to normative-ethical requirements, which we will thus call "transformative medical ethics." The framework becomes especially important when there is a gap between widely acknowledged, ethically justified normative claims and their realization in the practice of biomedicine and technology (ought-is gap). Building on prior work on translational bioethics, the framework maps a process with six different phases and 12 distinct translational steps. The steps involve various research activities including conceptual philosophical inquiry and (socio-)empirical research. On the one hand, the framework can be used as a heuristic tool to identify barriers to the transformation process. On the other hand, it can provide guidance for researchers and practitioners to develop appropriate (conceptual action and practice) models, which are then implemented and evaluated in specific practice contexts. We use the example of realizing the norm of respect for autonomy in the practice of medical decision-making to illustrate the framework. Further research is required, for example, to theoretically underpin the framework, to apply it to other ought-is gaps, and to evaluate its feasibility and effectiveness in various practice areas. Overall, the framework of transformative medical ethics suggests a strategic process to investigate and promote practice change that is ethically informed in all phases.
Subject(s)
Bioethics , Ethical Theory , Humans , Ethics, Medical , Empirical ResearchABSTRACT
Health innovation is mainly envisioned in direct connection to medical research institutions or pharmaceutical and technology companies. Yet, these types of innovation often do not meet the needs and expectations of individuals affected by health conditions. With the emergence of digital health technologies and social media, we can observe a shift, which involves people living with illness modifying and improving medical and health devices outside of the formal research and development sector, figuring both as users and innovators. This patient-led innovation has been celebrated in innovation studies and economics as a "bottom-up" type of innovation. In this article, we take a closer look at open-source patient-led innovation in the context of type 1 diabetes care. In our inquiry, we pay particular attention to the social and ethical dimensions of this innovation, building on empirical material. Upon exploring the notion of patient-led innovation and its socio-political context through the lens of intersectional and global health justice, we argue that a proactive strategy is needed to ensure that open-source patient-led innovation will be more globally accessible, center the health needs of the most underserved populations, as well as facilitate equitable and just health benefits. To support this aim, we provide a range of examples of different initiatives addressing the persistent inequalities that have so far inhibited patient-led innovation from more fully materializing its innovative potential.
ABSTRACT
Mobile health technologies (mHealth) promote the trend towards personal responsibility and self-management. By using the example of type 2 diabetes mellitus (T2DM), the article aims to deepen the discussion on mHealth, personal responsibility and justice-which has so far only been rudimentary-from a public health ethical perspective. It shows that in the field of T2DM, mHealth can on the one hand improve social health justice, but on the other hand can also exacerbate social health injustices. From a justice-focused, public health ethical perspective on T2DM mHealth, it is necessary to better understand whether and how vulnerable population groups are considered in mHealth development and implementation, how these groups experience the use of the technology, what social-epidemiological impacts the increasing use of mHealth can have, which health inequalities in the area of T2DM are unfair, to what extent personal responsibility should be placed in the hands of the users, and where the limits of personal responsibility lie. Considering social diversity and the social determinants of health is an ongoing process and must permeate all phases of mHealth development and implementation.
Subject(s)
Diabetes Mellitus, Type 2 , Mobile Applications , Telemedicine , Humans , Diabetes Mellitus, Type 2/epidemiology , Diabetes Mellitus, Type 2/therapy , Public Health , Germany , Social JusticeABSTRACT
The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their "chronic living" (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies.
