This article examines inequities in health and research using a framework that draws on the work of democratic education theorists Amy Gutmann and Kenneth Howe. Specifically, this article has three purposes: (a) extend the framework of democratic education to analyzing equity in health research, (b) discuss why subordinated groups lack sufficient information to make informed health decisions, and (c) examine potential solutions to redress research practices that exclude subordinated groups. The authors argue that for real opportunity and social justice in health research, two conditions must be present: a scientific community must produce relevant information through a rational deliberative process and groups affected by findings must be aware of and able to use the information.
Health disparities among the nation's populations are extensive, persistent, and well documented. African Americans and other groups subordinated by race, ethnicity, gender, and class have significantly lower life expectancies, higher maternal and infant mortality rates and higher rates of all leading causes of death than White Americans (Byrd & Clayton, 2000). Accordingly, this article examines inequities in health and, in particular, health research, utilizing an analytic framework that draws heavily on the work of educational theorists Amy Gutmann (1999) and Kenneth Howe (1997). More specifically, the purposes of this article are threefold: (a) to extend the framework of democratic education principles developed by Gutmann and Howe to the analysis of health and health research issues; (b) to discuss why groups subordinated by race/ethnicity, gender, and class do not have sufficient information to make decisions regarding health and healthcare; and (c) to examine potential solutions to redress the health research and programmatic agendas that presently exclude subordinated groups.
SOCIAL JUSTICE AND DEMOCRATIC THEORY
In democratic societies, the issue of social justice is at the core of all equity and justice discussions. Philosophers have addressed the definition of "social justice" since 1840, when the term was first used by a Sicilian priest (Novak, 2000). Most definitions address it as a "virtuous" end but also attempt to encompass notions of means to that end. Therefore, social justice can be viewed as both a process and an outcome.
Thus, a useful definition would address fair or equitable outcomes and fair principles or procedures to obtain such outcomes. A good working definition comes from the Social Justice Training Institute, which notes that "the goal of social justice education is full and equal participation of all groups in a society that is mutually shaped to meet their needs. Social justice includes a vision of society that is equitable and all members are physically and psychologically safe and secure" (Social Justice Training Institute, 2003, p. 1).
For democratic theorists, the primary concern is how do societies mete out, institutionalize, and measure social justice in various arenas of life. Since social justice must be distributed in some manner, some democratic theorists have focused their attention on a "distributive paradigm" (Foner, 1998; Huntington, 1991; West, 2004).
This type of paradigm generally focuses on procedures that allocate justice among competing groups positioned differentially in a social hierarchy. A distributive paradigm from economic theory that many are familiar with is the concept of "supply and demand." The idea assumes paradigmatic power, that is, guides questioning and limits perceptions, as an axiom in microeconomics. Other taken-for-granted, paradigmatic ideas about how to distribute power are "first come, first serve" and "finder's keepers." Taken to absurd lengths by traditionalists, both paradigmatic ideas about fairness have been used to justify colonialism, manifest destiny, and market driven solutions to educational equity/vouchers (Foner, 1998; Huntington, 1991; West, 2004). …