Women and the ethics of clinical research : broadening conceptions of justice

Contemporary debates concerning the participation of women in clinical research highlight the concept of social justice. In its most general sense, justice is understood to require that persons be treated fairly and that they be given what they are due. Social justice refers to society, and the manifestation of justice in its laws, institutions, moral rules, sanctions and conventions. The assertion that the knowledge sought and gained in the context of social institutions charged with promoting public health through conducting investigations with human subjects has not adequately contributed to the health of women, and the responses this has engendered, revolve around the concern that women have not received their due.

Where justice is discussed, in philosophical theories of justice generally, and in moral reflection on research with human subjects specifically, a framework focused on distribution holds privilege of place. Although it is clearly important to attend to issues of distribution, I argue here that when justice is reduced to distribution, we lack resources for illuminating all of the aspects in which research is unjust, and are greatly inhibited in the ability to envision and articulate measures crucial to the realization of justice for women. I show how an approach to social justice that integrates distributive remedies with critical attention to difference and the democratization of decision-making may guide the research enterprise. This conception of justice draws our moral attention to the myriad social and institutional relations, processes, and structures tied to the endeavors of clinical research, and to the ways these may constrain or enhance women's development and self-determination, that is, their capacities to lead lives they regard as healthful, to determine their actions, and to realize their choices.