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

IF 2.1 Q2 ETHICS

Research Ethics Pub Date : 2022-07-01 DOI:10.1177/17470161221076974

Sylvia Nabukenya, Joseph Ochieng, David Kaawa-Mafigiri, Ian Munabi, Janet Nakigudde, Frederick Nelson Nakwagala, John Barugahare, Betty Kwagala, Charles Ibingira, Adelline Twimwijukye, Nelson Sewankambo, Erisa Sabakaki Mwaka

{"title":"Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study.","authors":"Sylvia Nabukenya, Joseph Ochieng, David Kaawa-Mafigiri, Ian Munabi, Janet Nakigudde, Frederick Nelson Nakwagala, John Barugahare, Betty Kwagala, Charles Ibingira, Adelline Twimwijukye, Nelson Sewankambo, Erisa Sabakaki Mwaka","doi":"10.1177/17470161221076974","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":2.1000,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/0e/45/nihms-1839228.PMC9536131.pdf","citationCount":"4","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Research Ethics","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/17470161221076974","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ETHICS","Score":null,"Total":0}

引用次数: 4

Abstract

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.

查看原文本刊更多论文

主要研究小组成员在艾滋病毒感染者药物遗传学研究中获得知情同意的经验和做法:一项定性研究。

本研究旨在探讨主要研究团队成员在药物遗传学研究中获得知情同意的经验和做法，并确定在知情同意过程中加强理解的方法。数据收集涉及对主要研究人员进行15次定性深入访谈，这些研究人员参与了获得乌干达艾滋病毒感染者知情同意参加药物遗传临床试验的工作。该研究探讨了两个突出的主题:用于传达信息和增强研究参与者理解的方法以及在同意过程中面临的挑战。确定了获得同意的若干障碍和促进因素。本研究确定了创新和潜在有效的同意策略，应该进行研究和独立验证。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Research Ethics Arts and Humanities-Philosophy

CiteScore

4.30

自引率

11.80%

发文量

审稿时长

15 weeks