title: Engaging diverse social and cultural worlds: perspectives on benefits in international clinical research from South african communities.
abstract: The issue of benefits in international clinical research is highly controversial. Against the background of wide recognition of the need to share benefits of research, the nature of benefits remains strongly contested. Little is known about the perspectives of research populations on this issue and the extent to which research ethics discourses and guidelines are salient to the expectations and aspirations existing on the ground. This exploratory study contributes to filling this void by examining perspectives of people in low-income South African communities on benefits in international clinical research. Twenty-four individuals with and without experience of being involved in clinical research participated in in-depth interviews. Respondents felt that ancillary care should be provided to clinical research participants, while a clinical study conducted in particular community should bring better health to its members through post-trial benefits. Respondents' perspectives were grounded in the perception that the ultimate goal of international clinical research is to improve local health. We argue that perspectives and understandings of the respondents are shaped by local moral traditions rather than clinical research specificities and require attention as valid moral claims. It is necessary to acknowledge such claims and cultural worlds from which they emerge, thus building the foundation for equal and embracing dialogue to bridge different perspectives and handle contradicting expectations.
authors.forename: Olga
authors.initials: O
authors.lastname: Zvonareva
authors.forename: Nora
authors.initials: N
authors.lastname: Engel
authors.forename: Eleanor
authors.initials: E
authors.lastname: Ross
authors.forename: Ron
authors.initials: R
authors.lastname: Berghmans
authors.forename: Ames
authors.initials: A
authors.lastname: Dhai
authors.forename: Anja
authors.initials: A
authors.lastname: Krumeich
mesh_terms: D000328:Adult; D026686:Beneficence; D002986:Clinical Trials as Topic / Q000941:ethics*; D055812:Community-Based Participatory Research / Q000941:ethics*; D003466:Cultural Characteristics; D032984:Ethics, Research; D005260:Female; D015658:HIV Infections / Q000188:drug therapy / Q000517:prevention & control; D006301:Health Services Needs and Demand; D006801:Humans; D007391:International Cooperation; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D011203:Poverty; D011634:Public Health / Q000941:ethics; D036301:Qualitative Research; D012108:Research Personnel / Q000941:ethics; D012938:Social Perception; D012945:Social Values; D013019:South Africa
keywords: South Africa; benefit sharing; bioethics; clinical trials; culture; local perspectives