Makerere University School of Biomedical Sciences, Kampala, Uganda.
Makerere University School of Business and Management Studies, Kampala, Uganda.
PLoS One. 2022 Aug 29;17(8):e0273657. doi: 10.1371/journal.pone.0273657. eCollection 2022.
There is a plethora of unanswered ethical questions about sharing incidental findings in genetics and genomics research. Yet understanding and addressing such issues is necessary for communicating incidental findings with participants. We explored researchers' perspectives and experiences regarding feedback of incidental genomics findings to participants.
This was a qualitative study using semi-structured interview schedules for In-depth interviews. Thirty respondents were purposively selected based on role as genetics and genomics researchers in Uganda. Data were analysed through content analysis to identify emerging themes using a comprehensive thematic matrix. QSR International NVivo software was used to support data analysis.
a). On perceptions, sharing of incidental findings was acceptable and four themes emerged including role of professional judgement; role of ethics committees and ethical guidelines; optimal disclosure practices; limits to professional duty and uncertainty and; b). on practices, sharing had been carried out by some researchers and a theme on experience and practices emerged.
Feedback of incidental genomics research findings to participants is generally acceptable to researchers. Some researchers. Challenges include lack of ethical guidelines and uncertainty about the findings.
在遗传学和基因组学研究中，存在大量关于分享偶然发现的未解决的伦理问题。然而，理解和解决这些问题对于与参与者交流偶然发现是必要的。我们探讨了研究人员对向参与者反馈偶然发现的基因组学结果的看法和经验。
这是一项使用半结构式访谈提纲进行深入访谈的定性研究。根据乌干达遗传学和基因组学研究人员的角色，有目的选择了 30 名受访者。通过内容分析，使用综合主题矩阵来识别新兴主题，从而分析数据。使用 QSR International NVivo 软件支持数据分析。
a). 在看法方面，分享偶然发现是可以接受的，出现了四个主题，包括专业判断的作用；伦理委员会和伦理准则的作用；最佳披露做法；专业职责和不确定性的限制；b). 在实践方面，一些研究人员已经进行了分享，出现了一个关于经验和实践的主题。
向参与者反馈偶然发现的基因组学研究结果一般是可以接受的。一些研究人员面临的挑战包括缺乏伦理准则和对这些发现的不确定性。
