Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study

被引：6

作者：

Sylvia, Nabukenya ^{[1
]}

Joseph, Ochieng ^{[1
]}

David, Kaawa-Mafigiri ^{[2
]}

Ian, Munabi ^{[1
]}

Janet, Nakigudde ^{[1
]}

Nelson, Nakwagala Frederick ^{[3
]}

John, Barugahare ^{[2
]}

Betty, Kwagala ^{[1
]}

Charles, Ibingira ^{[1
]}

Adelline, Twimwijukye ^{[4
]}

Nelson, Sewankambo ^{[1
,4
]}

Sabakaki, Mwaka Erisa ^{[1
,4
]}

机构：

[1] Makerere Univ, Coll Hlth Sci, Mulago Hill Rd,POB 7072, Kampala, Uganda

[2] Makerere Univ, Coll Humanities & Social Sci, Kampala, Uganda

[3] Mulago Natl Referral Hosp, Kampala, Uganda

[4] Infect Dis Inst, Kampala, Uganda

来源：

RESEARCH ETHICS | 2022年 / 18卷 / 03期

基金：

美国国家卫生研究院;

关键词：

Informed consent; HIV research; pharmacogenetics research; assessment of understanding; Uganda; GENETIC RESEARCH; BIOBANKING;

D O I：

10.1177/17470161221076974

中图分类号：

B82 [伦理学（道德学）];

学科分类号：

摘要：

This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to convey information and enhance research participants' understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified.

引用

页码：193 / 209

页数：17

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