Collective forward-looking responsibility of patient advocacy organizations: conceptual and ethical analysis

Abstract

Background Patient advocacy organizations (PAOs) have an increasing influence on health policy and biomedical research, therefore, questions about the specific character of their responsibility arise: Can PAOs bear moral responsibility and, if so, to whom are they responsible, for what and on which normative basis? Although the concept of responsibility in healthcare is strongly discussed, PAOs particularly have rarely been systematically analyzed as morally responsible agents. The aim of the current paper is to analyze the character of PAOs’ responsibility to provide guidance to themselves and to other stakeholders in healthcare. Methods Responsibility is presented as a concept with four reference points: (1) The subject, (2) the object, (3) the addressee and (4) the underlying normative standard. This four-point relationship is applied to PAOs and the dimensions of collectivity and prospectivity are analyzed in each reference point. Results Understood as collectives, PAOs are, in principle, capable of intentionality and able to act and, thus, fulfill one prerequisite for the attribution of moral responsibility. Given their common mission to represent those affected, PAOs can be seen as responsible for patients’ representation and advocacy, primarily towards a certain group but secondarily in a broader social context. Various legal and political statements and the bioethical principles of justice, beneficence and empowerment can be used as a normative basis for attributing responsibility to PAOs. Conclusions The understanding of responsibility as a four-point relation incorporating collective and forward-looking dimensions helps one to understand the PAOs’ roles and responsibilities better. The analysis, thus, provides a basis for the debate about PAOs’ contribution and cooperation in the healthcare sector.

Not in their hands only: hospital hygiene, evidence and collective moral responsibility

“…Responsibility is typically understood to include both causal and normative dimensions (e.g., Müller et al 2021 , p. 3; Miller 2020 , p. 38). When attributing causal responsibility to an agent, we simply state that this agent contributed to an event taking place.…”

“…For instance, under what conditions should the doctor who has not washed and disinfected their hands be assigned moral responsibility for infecting the patient? There is a debate about whether it is possible to name a set of necessary and sufficient conditions for moral responsibility or obligation and if so, what those conditions are (Müller et al 2021 , p. 4; Brown and Savulescu 2019 , p. 637). 5 However, it is generally acknowledged that an agent cannot bear moral responsibility if they do not have control over their actions or lack an understanding of the potential consequences of those actions (List and Pettit 2011 , p. 155; Brown and Savulescu 2019 , p. 637; Müller et al 2021 , p. 3).…”

“…There is a debate about whether it is possible to name a set of necessary and sufficient conditions for moral responsibility or obligation and if so, what those conditions are (Müller et al 2021 , p. 4; Brown and Savulescu 2019 , p. 637). 5 However, it is generally acknowledged that an agent cannot bear moral responsibility if they do not have control over their actions or lack an understanding of the potential consequences of those actions (List and Pettit 2011 , p. 155; Brown and Savulescu 2019 , p. 637; Müller et al 2021 , p. 3). 6 In other words, the condition of control and some epistemic conditions must be satisfied before moral responsibility can be assigned (Müller et al 2021 , p. 3): an agent cannot be held morally responsible if they could not have acted differently— ought famously implies can (e.g., Collins 2013 , p. 232).…”

“…5 However, it is generally acknowledged that an agent cannot bear moral responsibility if they do not have control over their actions or lack an understanding of the potential consequences of those actions (List and Pettit 2011 , p. 155; Brown and Savulescu 2019 , p. 637; Müller et al 2021 , p. 3). 6 In other words, the condition of control and some epistemic conditions must be satisfied before moral responsibility can be assigned (Müller et al 2021 , p. 3): an agent cannot be held morally responsible if they could not have acted differently— ought famously implies can (e.g., Collins 2013 , p. 232). Moreover, accumulation of knowledge concerning causal responsibilities can change as to whom—or what—moral responsibility should be assigned.…”

“…The latter, in turn, refers to future actions and is sometimes discussed as collective obligation (Isaacs 2014 , p. 44). As Müller et al ( 2021 , p. 4) note, accounts of forward-looking responsibility often concern questions related to the prevention of certain events. Consequently, they can be applied to analyzing ethical aspects of hospital infection control.…”