Understanding of Critical Elements of Informed Consent in Genomic Research: A Case of a Paediatric HIV-TB Research Project in Uganda. (October 2022)

• Record Type: Journal Article
• Authors: Amayoa, Francis Anyaka; Nakwagala, Frederick Nelson; Barugahare, John; Munabi, Ian Guyton; Mwaka, Erisa Sabakaki
• Is Part Of: Journal of empirical research on human research ethics. Volume 17:Number 4(2022)
• Page Start: 483
• Page End: 493
• Publication Date: 2022-10
• Subjects: informed consent -- genomic research -- understanding -- research participants -- biobanking; Medical ethics -- Research -- Periodicals; Research -- Moral and ethical aspects -- Periodicals; 174.205
• DOI: 10.1177/15562646221100430
• Languages: English
• ISSNs: 1556-2646

Abstract

Several studies have reported inadequate comprehension of informed consent for genomic research. This study aimed to assess research participants' understanding of critical elements of informed consent for genomic research. A cross-sectional survey involving 123 parents/caregivers of children participating in a paediatric genomic TB/HIV study was conducted. Only 47.2% of the participants had adequate understanding of consent information. The mean objective (actual) and subjective (perceived) understanding scores were 78.7% and 91.7% respectively. Participants adequately understood most elements of consent however, some elements were poorly understood including foreseeable risks, protection of confidentiality and compensation for research related injury. Overall there was inadequate comprehension of critical elements of informed consent and there was dissonance between actual and perceived comprehension of informed consent.