Jegede Ayodele, Balogun Olubukola, Olorunsogbon Olorunyomi Felix, Nichols Michelle, Akinyemi Joshua, Jenkins Carolyn, Ogunronbi Mayowa, Singh Arti, Obiako Reginald, Wahab Kolawole, Bello Abiodun, Akpalu Albert, Sarfo Fred S, Owolabi Lukman F, Ojebuyi Babatunde, Adigun Muyiwa, Olujobi Dorcas, Musbahu Rabiu, Titiloye Musibau, Afolami Ibukun, Calys-Tagoe Benedict, Uvere Ezinne, Laryea Ruth, Fakunle Adekunle, Adeleye Osi, Adesina Deborah, Mensah Nathaniel, Oguike Wisdom, Coleman Nathaniel, Adeniyi Sunday, Omotoso Lanre, Asibey Shadrack, Melikam Lois, Yusuf Jibril, Gbenga Abdullateef, Mande Aliyu, Uthman Muhammed, Kalaria Rajesh N, Owolabi Mayowa, Ovbiagele Bruce, Arulogun Oyedunni, Akinyemi Rufus O
Department of Sociology, Faculty of the Social Sciences, University of Ibadan, Nigeria.
Neuroscience and Ageing Research Unit, Institute for Advanced Medical Research and Training, College of Medicine, University of Ibadan, Nigeria.
medRxiv. 2023 Oct 3:2023.10.03.23296473. doi: 10.1101/2023.10.03.23296473.
There is a growing interest in stroke genomics and neurobiobanking research in Africa. These raise several ethical issues, such as consent, re-use, data sharing, storage, and incidental result of biological samples. Despite the availability of ethical guidelines developed for research in Africa, there is paucity of information on how the research participants' perspectives could guide the research community on ethical issues in stroke genomics and neurobiobanking research. To explore African research participants' perspectives on these issues, a study was conducted at existing Stroke Investigation Research and Education Network (SIREN) sites in Nigeria and Ghana.
Using an exploratory design, twenty-eight Focus Group Discussions (FGDs) sessions were conducted with stroke survivors (n=7), caregivers(n=7), stroke - free controls(n=7), and Community Advisory Board members(n=7). Data were collected using an interview guide. Interviews were conducted in English and indigenous languages of the community, audio recorded, and transcribed verbatim. Data were analyzed using NVivo (March, 2020) Software.
Results revealed that stroke genomics and neurobiobanking research in Africa require researchers' direct attention to ethical issues. Concerns were raised about understanding, disclosure and absence of coercion as components of true autonomous decision making in research participation. Participants argued that the risk and benefits attached to participation should be disclosed at the time of recruitment. Fears around data sharing were voiced as adherence to the principle of privacy and confidentiality were of paramount importance to participants. The preference was to receive the results of incidental findings with no stigma attached from society.
Research participants' perspectives are a vital aspect of community engagement in stroke genomics and neurobiobanking research. Findings from this study suggest that research participants are interested in these fields of research in Africa if their concerns about ethical issues are appropriately addressed within the research framework.
非洲对中风基因组学和神经生物样本库研究的兴趣与日俱增。这引发了若干伦理问题，例如同意、再利用、数据共享、存储以及生物样本的附带结果。尽管有针对非洲研究制定的伦理准则，但关于研究参与者的观点如何能在中风基因组学和神经生物样本库研究的伦理问题上为研究界提供指导，相关信息却很匮乏。为了探究非洲研究参与者对这些问题的看法，在尼日利亚和加纳现有的中风调查研究与教育网络（SIREN）站点开展了一项研究。
采用探索性设计，与中风幸存者（n = 7）、护理人员（n = 7）、无中风对照组（n = 7）以及社区咨询委员会成员（n = 7）进行了28次焦点小组讨论（FGD）。使用访谈指南收集数据。访谈用英语和社区的本土语言进行，录音并逐字转录。使用NVivo（2020年3月）软件进行数据分析。
结果显示，非洲的中风基因组学和神经生物样本库研究需要研究人员直接关注伦理问题。对于作为研究参与中真正自主决策组成部分的理解、披露和无胁迫情况，人们提出了关切。参与者认为，参与研究的风险和益处应在招募时予以披露。由于坚持隐私和保密原则对参与者至关重要，因此表达了对数据共享的担忧。参与者希望在不承受社会污名的情况下收到附带发现的结果。
研究参与者的观点是中风基因组学和神经生物样本库研究中社区参与的一个重要方面。本研究结果表明，如果在研究框架内适当解决他们对伦理问题的关切，研究参与者会对非洲这些研究领域感兴趣。
