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Profiles and voices of participants in clinical research in Brazil

Abstract

This case study aimed to trace the socioeconomic profile of participants in clinical research at a Brazilian research center, analyzing their decisions, motivations, experiences, knowledge of risks, benefits and health care provided, and the consent process. The data of 327 participants were collected, and semi-structured interviews conducted with 19 of them. In the research carried out at the center studied there was a greater participation of men and of people with few years of formal education and low income. Most are retired and have no private health plan, tend not to notice the effects of the investigation, or to overestimate its direct medical benefits. The search for medical treatment was the main factor influencing their decisions/participation, and signing the informed consent form did not guarantee the expression of autonomy. We concluded that the participants’ profile and speeches content are sensitive indicators of vulnerability and social inequality.

Keywords:
Researcher-subject relations; Clinical trials as topic; Social vulnerability; Health equity; Socioeconomic factors; Ethics in research; Bioethics

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