Full-Spectrum Proxy Consent for Research Participation When Persons With Alzheimer Disease Lose Decisional Capacities: Research Ethics and the Common Good

This chapter argues that prospective review of research before bodies of diverse representation should not be understood as a paternalistic interference in the private interactions between researchers and participants. Instead, it is a mechanism for resolving a set of coordination problems that threaten the integrity of research. Its proper role is to provide credible social assurance that the research enterprise constitutes a voluntary scheme of cooperation through which diverse stakeholders can contribute to the common good without being subject to the arbitrary exercise of social authority including antipathy, abuse, coercion, domination, exploitation, or other forms of harmful, unfair, or disrespectful treatment. The limitations of prospective review are discussed, including the need for mechanisms that better address incentives for a wider range of stakeholders whose decisions shape the research agenda.

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For the Common Good

10.1093/oso/9780197534830.001.0001 ◽

2021 ◽

Author(s):

Alex John London

Keyword(s):

Research Ethics ◽

Social Order ◽

Common Good ◽

Social Institutions ◽

Social Cooperation ◽

Philosophical Foundations ◽

The Common Good ◽

Moral Claims ◽

The Common ◽

Study Participants

The foundations of research ethics are riven with fault lines emanating from a fear that if research is too closely connected to weighty social purposes an imperative to advance the common good through research will justify abrogating the rights and welfare of study participants. The result is an impoverished conception of the nature of research, an incomplete focus on actors who bear important moral responsibilities, and a system of ethics and oversight highly attuned to the dangers of research but largely silent about threats of ineffective, inefficient, and inequitable medical practices and health systems. In For the Common Good: Philosophical Foundations of Research Ethics, Alex John London defends a conception of the common good that grounds a moral imperative with two requirements. The first is to promote research that generates the information necessary to enable key social institutions to effectively, efficiently, and equitably safeguard the basic interests of individuals. The second is to ensure that research is organized as a voluntary scheme of social cooperation that respects its various contributors’ moral claims to be treated as free and equal. Connecting research to the goals of a just social order grounds a framework for assessing and managing research risk that reconciles these requirements and justifies key oversight practices in non-paternalistic terms. Reconceiving research ethics as resolving coordination problems and providing credible assurance that these requirements are being met expands the issues and actors that fall within the purview of the field and provides the foundation for a more unified and coherent approach to domestic and international research.

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