title: Planning for Ancillary Care Provision: Lessons From the Developing World.
abstract: As part of a study designed to assess a new strategy for increasing health research participation by members of underrepresented populations in the United States, we explored expectations about volunteering for research among people from lower income and largely minority communities in Madison, Wisconsin. Members of these communities often saw research participation as a means to access health care that might otherwise be unavailable to them. In light of persistent structural barriers to access, and the resulting health disparities, we argue that one cannot assume the existence of a "fair exchange" in which a community is likely to benefit from the results of research conducted with members of that community. We use ethical analysis and empirical research conducted in the developing world to explore how investigators in the United States might think about their obligations to provide ancillary care.
authors.affiliation: University of Wisconsin-Madison, USA najacobson@wisc.edu.
authors.forename: Nora
authors.initials: N
authors.lastname: Jacobson
authors.affiliation: University of Wisconsin-Madison, USA.
authors.forename: Anna
authors.initials: A
authors.lastname: Krupp
authors.affiliation: University of Wisconsin-Madison, USA.
authors.forename: Barbara J
authors.initials: BJ
authors.lastname: Bowers
mesh_terms: D055812:Community-Based Participatory Research / Q000941:ethics*; D003159:Community-Institutional Relations; D019049:Developed Countries; D003906:Developing Countries; D032984:Ethics, Research; D006296:Health Services; D006297:Health Services Accessibility; D006801:Humans; D008913:Minority Groups; D011203:Poverty; D035842:Research Subjects; D012111:Residence Characteristics; D012935:Social Justice; D012941:Social Responsibility; D055990:Therapeutic Misconception; D014838:Volunteers; D014922:Wisconsin
keywords: ancillary care; research participation; underrepresented populations