Informed Consent among Hansen’s Disease Patients – A Nigerian Perspective

Abstract

Background: Informed consent entails providing potential participants with adequate information needed to decide whether or not to participate in research. In Nigeria, Hansen's disease has remained a disease of public health importance. The associated stigmatization often renders patients vulnerable and prone to exploitation. The act of obtaining informed consent from these patients remain an issue of ethical importance. The study aimed to determine the willingness of Hansen's disease patients to give consent to use their data in the form of pictures, videos and/or oral interviews by a third party.

Materials and Method: This descriptive cross-sectional study was carried out in three states in Nigeria; Ebonyi, Ogun and Cross River States. Data was collected from consenting participants using researcher-administered semi-structured questionnaires.

Results: The study included 93 respondents with a mean (SD) age of 44.9 (20.1) years. The majority 57 (61.29%) of the respondents were farmers while the majority 67 (72.04%) attained primary education. A total of 26 (27.96%) respondents had suffered discrimination in the course of their disease. In their responses, 83 (89.2%) would allow the use of their pictures, 80 (86.0%) their videos and 86 (92.5%) their recorded oral interviews. Among those who would not give consent, the commonest reasons adduced were an intrusion into privacy and lack of trust.

Conclusion: Though a majority of the patients would give consent for use of their data intrusion into privacy and lack of trust were major constraints for those not willing to give consent. Caregivers and stakeholders should put more effort into trying to win patients' trust before seeking informed consent.