Prevalence and reasons for refusal to participate in clinical research

Abstract The information provided regarding the prevalence and reasons why volunteers refuse to participate in scientific research is sparse. This article aims to describe the prevalence and reasons for refusing to voluntarily participate in the cohort study whose objective is to evaluate morbidity and mortality amongst people living with HIV/AIDS (PLWHA), through a cross-sectional study conducted at the Centro de Treinamento e Referência em Doenças Infecciosas e Parasitárias (Training and Referral Center for Infectious and Parasitic Diseases). The following information was obtained: origin, date of birth, age, gender, and reason for not consenting, when applicable. The lack of time to devote to the research was the main reason given (63%), followed by fear of lack of confidentiality (17%). There was no statistical difference among those who accepted or not to participate in terms of gender, age or origin of the service. The percentage of PLWHA who refused to participate in the study (40.7%) and lack of time available for their participation (63%) were considered high.

摘要 目前关于科研志愿者拒参科学研究的现状及原因的相关研究资料较为匮乏。本研究通过在感染与寄生虫病培训与转诊中心（Centro de Treinamento e Referência em Doenças Infecciosas e Parasitárias）开展的横断面研究，旨在描述针对人类免疫缺陷病毒/获得性免疫缺陷综合征（HIV/AIDS）感染者（PLWHA）发病与死亡情况开展的队列研究中，志愿者拒参该研究的现状及原因。本次研究收集了如下信息：研究对象的服务来源、出生日期、年龄、性别，以及拒参原因（仅针对拒绝参与研究的对象）。最主要的拒参原因为无充足时间投入研究（占比63%），其次为担忧研究无法保障个人信息保密性（占比17%）。在性别、年龄及服务来源维度上，参与研究与拒参研究的对象之间未发现统计学差异。人类免疫缺陷病毒/获得性免疫缺陷综合征感染者（PLWHA）的拒参率达40.7%，且其主要拒因（无充足参与时间）占比达63%，上述两项比例均处于较高水平。