Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa.
Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa.
复制标题
DOI：
10.1186/s12910-022-00782-z
复制
发表时间：
2022-04-18
影响因子：
2.7
通讯作者：
Seeley, Janet
中科院分区：
文献类型：
--
作者：
Luthuli, Manono;Ngwenya, Nothando;Gumede, Dumsani;Gunda, Resign;Gareta, Dickman;Koole, Olivier;Siedner, Mark J.;Wong, Emily B.;Seeley, Janet
在识字率低和医疗保健机会有限的非洲背景下，对生物库的解释和理解为未来的基因组研究进行了有限的研究。我们报告了一项关于参与者理解的子研究的结果，该研究嵌入了南非夸祖鲁-纳塔尔农村地区一项名为Vukuzazi的多疾病社区健康筛查和生物库平台研究中。对受邀参加Vukuzazi研究的研究参与者进行了半结构化访谈，包括参与者和非参与者，以及参与研究的研究人员。采访被转录，主题从采访记录中确定，手动编码，并进行主题分析。39名受访者接受了采访。我们发现，研究小组通过描述遗传特征如何在个体之间创造相似性来解释生物库和未来的基因组研究。然而，参与7个月后，对这一解释的回忆和理解是不同的。关于Vukuzazi研究目标和程序的大量信息对参与者召回提出了挑战。到采访时，一些参与者回忆起了这项研究的遗传学方面的基本事实，但许多人对遗传学和生物库几乎没有兴趣。参与者对同意过程中提供的与遗传学和生物库有关的信息的理解受到信息量以及参与者对所讨论的主题的兴趣(或缺乏兴趣)的影响。我们建议开展生物库和基因组研究的未来研究将向参与者解释这类研究视为研究人员、参与者和社区之间持续不断的交流过程，并建议在这些解释中纳入说明性图像和视频图形讲故事，因为以前发现这些解释有助于识字率较低的人理解。研究也应该避免有更广泛的研究目标，因为这可能会转移参与者的兴趣，从而理解为什么要收集他们的样本。网上版载有补充材料，可在10.1186/s12910022-00782-z上查阅。
Limited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural KwaZulu-Natal, South Africa. Semi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff that worked on the study. The interviews were transcribed, and themes were identified from the interview transcripts, manually coded, and thematically analysed. Thirty-nine individuals were interviewed. We found that the research team explained biobanking and future genomic research by describing how hereditary characteristics create similarities among individuals. However, recollection and understanding of this explanation seven months after participation was variable. The large volume of information about the Vukuzazi study objectives and procedures presented a challenge to participant recall. By the time of interviews, some participants recalled rudimentary facts about the genetic aspects of the study, but many expressed little to no interest in genetics and biobanking. Participant’s understanding of information related to genetics and biobanking provided during the consent process is affected by the volume of information as well as participant’s interest (or lack thereof) in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research treat explanations of this kind of research to participants as an on-going process of communication between researchers, participants and the community and that explanatory imagery and video graphic storytelling should be incorporated into theses explanations as these have previously been found to facilitate understanding among those with low literacy levels. Studies should also avoid having broader research objectives as this can divert participant’s interest and therefore understanding of why their samples are being collected. The online version contains supplementary material available at 10.1186/s12910-022-00782-z.
登录
查看更多内容
影响因子：
--
作者：
LAVELLEJONES, C;BYRNE, DJ;CUSCHIERI, A
通讯作者：
CUSCHIERI, A
影响因子：
1.6
作者：
Ewing, Altovise T.;Erby, Lori A. H.;Kaufman, David
通讯作者：
Kaufman, David
影响因子：
24.3
作者：
Cambon-Thomsen, A.;Rial-Sebbag, E.;Knoppers, B. M.
通讯作者：
Knoppers, B. M.
影响因子：
2.7
作者：
Ssali, Agnes;Poland, Fiona;Seeley, Janet
通讯作者：
Seeley, Janet
DOI：
10.1525/jer.2013.8.4.42
发表时间：
2013-10-01
影响因子：
1.3
作者：
Robinson, Jill Oliver;Slashinski, Melody J.;McGuire, Amy L.
通讯作者：
McGuire, Amy L.