Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa.
<h4>Background</h4>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 develo...
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Public Library of Science (PLoS)
2025-01-01
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| Online Access: | https://doi.org/10.1371/journal.pone.0292906 |
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| author | Ayodele Jegede Olubukola Balogun Olorunyomi Felix Olorunsogbon Michelle Nichols Joshua Akinyemi Carolyn Jenkins Mayowa Ogunronbi Arti Singh Reginald Obiako Kolawole Wahab Abiodun Bello Albert Akpalu Fred S Sarfo Lukman F Owolabi Babatunde Ojebuyi Muyiwa Adigun Dorcas Olujobi Rabiu Musbahu Musibau Titiloye Ibukun Afolami Benedict Calys-Tagoe Ezinne Uvere Ruth Laryea Adekunle Fakunle Osi Adeleye Deborah Adesina Nathaniel Mensah Wisdom Oguike Nathaniel Coleman Sunday Adeniyi Lanre Omotoso Shadrack Asibey Lois Melikam Jibril Yusuf Abdullateef Gbenga Aliyu Mande Muhammed Uthman Rajesh N Kalaria Mayowa Owolabi Bruce Ovbiagele Oyedunni Arulogun Rufus O Akinyemi |
| author_facet | Ayodele Jegede Olubukola Balogun Olorunyomi Felix Olorunsogbon Michelle Nichols Joshua Akinyemi Carolyn Jenkins Mayowa Ogunronbi Arti Singh Reginald Obiako Kolawole Wahab Abiodun Bello Albert Akpalu Fred S Sarfo Lukman F Owolabi Babatunde Ojebuyi Muyiwa Adigun Dorcas Olujobi Rabiu Musbahu Musibau Titiloye Ibukun Afolami Benedict Calys-Tagoe Ezinne Uvere Ruth Laryea Adekunle Fakunle Osi Adeleye Deborah Adesina Nathaniel Mensah Wisdom Oguike Nathaniel Coleman Sunday Adeniyi Lanre Omotoso Shadrack Asibey Lois Melikam Jibril Yusuf Abdullateef Gbenga Aliyu Mande Muhammed Uthman Rajesh N Kalaria Mayowa Owolabi Bruce Ovbiagele Oyedunni Arulogun Rufus O Akinyemi |
| author_sort | Ayodele Jegede |
| collection | DOAJ |
| description | <h4>Background</h4>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.<h4>Method</h4>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.<h4>Result</h4>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.<h4>Conclusion</h4>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. |
| format | Article |
| id | doaj-art-96f2a573bd7d4e13b1e7d12efbf8d911 |
| institution | DOAJ |
| issn | 1932-6203 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj-art-96f2a573bd7d4e13b1e7d12efbf8d9112025-08-20T03:13:33ZengPublic Library of Science (PLoS)PLoS ONE1932-62032025-01-01205e029290610.1371/journal.pone.0292906Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa.Ayodele JegedeOlubukola BalogunOlorunyomi Felix OlorunsogbonMichelle NicholsJoshua AkinyemiCarolyn JenkinsMayowa OgunronbiArti SinghReginald ObiakoKolawole WahabAbiodun BelloAlbert AkpaluFred S SarfoLukman F OwolabiBabatunde OjebuyiMuyiwa AdigunDorcas OlujobiRabiu MusbahuMusibau TitiloyeIbukun AfolamiBenedict Calys-TagoeEzinne UvereRuth LaryeaAdekunle FakunleOsi AdeleyeDeborah AdesinaNathaniel MensahWisdom OguikeNathaniel ColemanSunday AdeniyiLanre OmotosoShadrack AsibeyLois MelikamJibril YusufAbdullateef GbengaAliyu MandeMuhammed UthmanRajesh N KalariaMayowa OwolabiBruce OvbiageleOyedunni ArulogunRufus O Akinyemi<h4>Background</h4>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.<h4>Method</h4>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.<h4>Result</h4>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.<h4>Conclusion</h4>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.https://doi.org/10.1371/journal.pone.0292906 |
| spellingShingle | Ayodele Jegede Olubukola Balogun Olorunyomi Felix Olorunsogbon Michelle Nichols Joshua Akinyemi Carolyn Jenkins Mayowa Ogunronbi Arti Singh Reginald Obiako Kolawole Wahab Abiodun Bello Albert Akpalu Fred S Sarfo Lukman F Owolabi Babatunde Ojebuyi Muyiwa Adigun Dorcas Olujobi Rabiu Musbahu Musibau Titiloye Ibukun Afolami Benedict Calys-Tagoe Ezinne Uvere Ruth Laryea Adekunle Fakunle Osi Adeleye Deborah Adesina Nathaniel Mensah Wisdom Oguike Nathaniel Coleman Sunday Adeniyi Lanre Omotoso Shadrack Asibey Lois Melikam Jibril Yusuf Abdullateef Gbenga Aliyu Mande Muhammed Uthman Rajesh N Kalaria Mayowa Owolabi Bruce Ovbiagele Oyedunni Arulogun Rufus O Akinyemi Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa. PLoS ONE |
| title | Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa. |
| title_full | Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa. |
| title_fullStr | Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa. |
| title_full_unstemmed | Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa. |
| title_short | Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa. |
| title_sort | research participants perception of ethical issues in stroke genomics and neurobiobanking research in africa |
| url | https://doi.org/10.1371/journal.pone.0292906 |
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