论文部分内容阅读
目的调查中国现有社区顾问委员会(Community Advisory Boards,CABs)的工作实施情况,研究CAB在获得性免疫缺陷综合征(Acguired Immunodeficiency Syndrome,AIDS)科学研究及防治工作中的意义、作用以及存在的问题,从伦理学视角讨论和分析,提出建议(结论)。方法对CABs成立不同时间的三个有代表性的省(自治区)进行调查,分别是中国最早(2001年7月)成立CAB的广西横县,2004年4月成立CAB的安徽阜阳市,2004年7月和2005年9月成立CABs的云南开远、个旧市。对全部CABs成员进行问卷调查,同时对CABs工作人员及现场的工作伙伴一对一进行访谈。结果CABs人员组成具有一定的代表性,工作中能执行其职责;工作意愿是积极和正面的;能完成交给的工作任务,但管理水平参差不齐。结论CABs的建立和存在,从社区和参与者角度具有重要的伦理意义,在弱势群体的保护、多元文化的尊重、知识传播、知情权的保护等方面有着不可替代的作用。参与者、病人和社区的参与是必要和势在必行的。
Objective To investigate the implementation status of the existing community advisory boards (CABs) in China and to study the significance, role and existing problems of CAB in the scientific research and prevention and treatment of Acguired Immunodeficiency Syndrome (AIDS) , Discuss and analyze from the perspective of ethics and make suggestions (conclusion). Methods Three representative provinces (autonomous regions) at different times of establishment of CABs were surveyed. They were the earliest (July 2001) CAB Guangxi Heng County, the establishment of CAB in April 2004 in Anhui Fuyang City, 2004 July and 2005 September set up CABs in Yunnan Kaiyuan, Gejiu City. Conduct a questionnaire survey of all CABs members and conduct one-on-one interviews with CABs staff and field partners. Results The composition of CABs staff was representative, and their responsibilities were fulfilled in their work. The willingness to work was positive and positive; the tasks assigned to them could be completed but the management level was uneven. Conclusion The establishment and existence of CABs have important ethical significance from the point of community and participants. They play an irreplaceable role in the protection of disadvantaged groups, multicultural respect, knowledge dissemination and the protection of the right to information. Participation of patients, patients and communities is necessary and imperative.