Faculty of Medical Sciences, College of Medicine, University of Nigeria, Ituku/Ozalla Campus, Enugu, Nigeria.
College of Medicine, University of Lagos, Nigeria.
Ann Afr Med. 2021 Jul-Sep;20(3):178-183. doi: 10.4103/aam.aam_27_20.
Informed consent is a basic ethical requirement in situations involving sharing of patients' data. It supports and upholds the ethical principle of respect for persons and individual autonomy. For Buruli ulcer (BU) patients, associated stigma renders them vulnerable, hence the need for emphasis on additional protection by ensuring obtaining informed consent before third party use of their data. The authors therefore sought to determine willingness of these patients to give informed consent to the third party use of their data before and after treatment.
This cross-sectional study was carried out between February and August, 2019. The study involved BU patients from three endemic states in Nigeria. Data were collected using pretested, researcher-administered semi-structured questionnaires.
A total of 92 respondents participated in the study. The median age was 23.5 years (range 4-74 years) with the age group <15 years being the modal age group 36 (39.13%). About a quarter of the respondents (23.91%) had suffered some form of discrimination in the course of their disease. Majority 86 (93.48%) were favorably disposed to allowing the use of their data for donor drive, policy development, and teaching/training purposes. A significant greater proportion of respondents 90 (97.83%) were willing to give consent for the use of their oral interview as against pictures and videos both in the pre- and post-treatment periods.
The present study provides evidence that majority of the respondents were positively inclined to give consent to use of their data by a third party. However, intrusion into privacy and anonymity were major concerns for the respondents.
知情同意是涉及患者数据共享的情况下的基本伦理要求。它支持和维护尊重个人和个人自主权的伦理原则。对于布吕利溃疡（BU）患者，相关的耻辱感使他们变得脆弱，因此需要通过确保在第三方使用其数据之前获得知情同意来强调额外的保护。因此，作者试图确定这些患者在治疗前后是否愿意同意第三方使用其数据。
这项横断面研究于 2019 年 2 月至 8 月进行。研究涉及来自尼日利亚三个流行地区的 BU 患者。数据是使用经过预测试的、由研究人员管理的半结构式问卷收集的。
共有 92 名受访者参加了这项研究。中位数年龄为 23.5 岁（范围 4-74 岁），年龄组<15 岁为模态年龄组 36（39.13%）。约四分之一的受访者（23.91%）在患病过程中遭受过某种形式的歧视。大多数 86（93.48%）受访者赞成允许将其数据用于捐赠活动、政策制定和教学/培训目的。在治疗前后，与照片和视频相比，有更多的受访者 90（97.83%）愿意同意使用他们的口头采访。
本研究表明，大多数受访者倾向于同意第三方使用其数据。然而，受访者主要关注隐私和匿名性的侵犯。
