‘In a completely different light’? The role of ‘being affected’ for the epistemic perspectives and moral attitudes of patients, relatives and lay people

Abstract

In this paper, we explore and discuss the use of the concept of being affected in biomedical decision making processes in Germany. The corresponding German term 'Betroffenheit' characterizes on the one hand a relation between a state of affairs and a person and on the other an emotional reaction that involves feelings like concern and empathy with the suffering of others. An example for the increasing relevance of being affected is the postulation of the participation of people with disabilities and chronic or acute diseases in the discourse, as partly realized in the German National Ethics Council or the Federal Joint Committee. Nevertheless, not only on the political level, the resistance against the participation of affected people is still strong; the academic debate seems to be cross-grained, too. Against this background, we explore the meaning and argumentative role of the concept of being affected as it is used by affected and lay people themselves. Our analysis is based on four focus group discussions in which lay people, patients and relatives of patients discuss their attitudes towards biomedical interventions such as organ transplantation and genetic testing. This setting allows for a comparison of how affected and non-affected people are concerned and deliberate about medical opportunities, but also of how they position themselves as being affected or non-affected with respect to (scientific) knowledge and morality. On this basis, we discuss the normative relevance of being affected for the justification of political participation.

“One man’s trash is another man’s treasure”: exploring economic and moral subtexts of the “organ shortage” problem in public views on organ donation

“…Our results emphasise the considerable relevance of perspectivism in the field of organ donation 20. Against this background, we conclude that the ethical scope of public discourse needs to be broadened: all participants should step back and explicate, reflect and justify their premises in order not to exclude legitimate perspectives and potential solutions from the start.…”

<p>Involving Patient Groups in Drug Research: A Systematic Review of Reasons</p>

“…Indeed, there are arguments stressing that the status of being affected fundamentally distinguishes healthy people from ill people who, therefore, deserve representation. 42 While most authors agree that this is a desirable goal, some express concerns about whether and how this goal can be achieved by involving PGs. Strategies for addressing these concerns have been rarely discussed so far.…”

Nachdenken im Kinosessel? Bioethische Reflexion durch Filme als eine neue Möglichkeit der Diskussion von Standpunkten und Betroffenheit

“…So kann eine Person z. B. von radioaktiver Strahlung betroffen sein, ohne sich betroffen zu fühlen oder ihre Betroffenheit zu bemerken [23]. Diese Form des Betroffenendiskurses beinhaltet einen Perspektivenpluralismus, der nicht allein auf Meinungsdifferenzen, sondern auf unterschiedliche Formen des Rollenverständnisses, der Erfahrung mit dem medizinischen System oder auch moralisch-religiösen Grundhaltungen zurückzuführen ist [21].…”