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":"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。","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":"18 3","pages":"193-209"},"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":"{\"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\":\"18 3\",\"pages\":\"193-209\"},\"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}","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}
Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study.
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.