BMJ Open (Jul 2021)
Sickle Cell Disease Genomics of Africa (SickleGenAfrica) Network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria and Tanzania
- Ellis Owusu-Dabo,
- Mahmoud U Sani,
- David Nana Adjei,
- Nicola Mulder,
- Gordon Awandare,
- Vivian Paintsil,
- Obiageli Nnodu,
- Jonathan Stiles,
- Kofi A Anie,
- Solomon Fiifi Ofori-Acquah,
- Julie Makani,
- Edeghonghon Olayemi,
- Titilope Adenike Adeyemo,
- Najibah Aliyu Galadanci,
- Furahini Tluway,
- Peter Mensah,
- Joseph Sarfo-Antwi,
- Henry Nwokobia,
- Awwal Gambo,
- Adebola Benjamin,
- Arafa Salim,
- Judith A Osae-Larbi,
- Amma Benneh-Akwasi Kuma,
- Anita Ghansah,
- Catherine Segbefia,
- Solomon F Ofori-Acquah,
- William Kudzi,
- Vivian Painstil,
- Aisha Kuliya-Gwarzo,
- Adullahi Shehu,
- Baba Musa,
- Mahmoud Sani,
- Najibah Aliyu Galandanci,
- Alashle Abimiku,
- Ameh Adeyefa,
- Obiageli E. Nnodu,
- Michael Akinsete,
- Olufunto Kalejaiye,
- Titilope Adeyemo,
- Flora Ndobho,
- Josephine Mgaya,
- Siana Nkya,
- Flordeliza Villanueva,
- Samit Ghosh,
- Solomon Ofori-Acquah,
- Ryan Minster
Affiliations
- Ellis Owusu-Dabo
- 2Kwame Nkrumah University of Science and Technology, Ghana
- Mahmoud U Sani
- Department of Medicine, Bayero University and Aminu Kano Teaching Hospital, Kano, Nigeria
- David Nana Adjei
- School of Biomedical and Allied Health Sciences, College of Health Sciences, University of Ghana, Legon, Ghana
- Nicola Mulder
- 6 Computational Biology Division, Department of Integrative Biomedical Sciences, IDM, University of Cape Town Faculty of Heath Sciences, Cape Town, South Africa
- Gordon Awandare
- Vivian Paintsil
- School of Medical Sciences, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana
- Obiageli Nnodu
- Centre of Excellence for Sickle Cell Disease Research & Training (CESRTA), University of Abuja, Abuja, Nigeria
- Jonathan Stiles
- Kofi A Anie
- Haematology and Sickle Cell Centre, London North West University Healthcare NHS Trust, London, UK
- Solomon Fiifi Ofori-Acquah
- School of Biomedical and Allied Health Sciences, College of Health Sciences, University of Ghana, Legon, Ghana
- Julie Makani
- Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania
- Edeghonghon Olayemi
- Department of Haematology, University of Ghana Medical School, University of Ghana, Accra, Ghana
- Titilope Adenike Adeyemo
- 3 Department of Hematology & Blood Transfusion, University of Lagos College of Medicine, Lagos, Nigeria
- Najibah Aliyu Galadanci
- Department of Epidemiology, School of Public Health, University of Alabama at Birmingham, Birmingham, Alabama, USA
- Furahini Tluway
- Sydney Brenner Institute for Molecular Bioscience, University of the Witwatersrand, Johannesburg, South Africa
- Peter Mensah
- Community Liaison, Accra, Ghana
- Joseph Sarfo-Antwi
- Community Liaison, Kumasi, Ghana
- Henry Nwokobia
- Community Liaison, Lagos, Nigeria
- Awwal Gambo
- Community Liaison, Kano, Nigeria
- Adebola Benjamin
- Community Liaison, Abuja, Nigeria
- Arafa Salim
- Community Liaison, Dar es Salaam, Tanzania, United Republic of
- Judith A Osae-Larbi
- West African Genetic Medicine Centre (WAGMC), College of Health Sciences, University of Ghana, Legon, Ghana
- Amma Benneh-Akwasi Kuma
- Anita Ghansah
- Catherine Segbefia
- Solomon F Ofori-Acquah
- William Kudzi
- Vivian Painstil
- Aisha Kuliya-Gwarzo
- Adullahi Shehu
- Baba Musa
- Mahmoud Sani
- Najibah Aliyu Galandanci
- Alashle Abimiku
- Ameh Adeyefa
- Obiageli E. Nnodu
- Michael Akinsete
- Olufunto Kalejaiye
- Titilope Adeyemo
- Flora Ndobho
- Josephine Mgaya
- Muhimbili University of Health and Allied Sciences, Dar es Salaam, United Republic of Tanzania
- Siana Nkya
- Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania
- Flordeliza Villanueva
- Samit Ghosh
- Solomon Ofori-Acquah
- Ryan Minster
- DOI
- https://doi.org/10.1136/bmjopen-2020-048208
- Journal volume & issue
-
Vol. 11,
no. 7
Abstract
Objectives To provide lay information about genetics and sickle cell disease (SCD) and to identify and address ethical issues concerning the Sickle Cell Disease Genomics of Africa Network covering autonomy and research decision-making, risk of SCD complications and organ damage, returning of genomic findings, biorepository, data sharing, and healthcare provision for patients with SCD.Design Focus groups using qualitative methods.Setting Six cities in Ghana, Nigeria and Tanzania within communities and secondary care.Participants Patients, parents/caregivers, healthcare professionals, community leaders and government healthcare representatives.Results Results from 112 participants revealed similar sensitivities and aspirations around genomic research, an inclination towards autonomous decision-making for research, concerns about biobanking, anonymity in data sharing, and a preference for receiving individual genomic results. Furthermore, inadequate healthcare for patients with SCD was emphasised.Conclusions Our findings revealed the eagerness of patients and parents/caregivers to participate in genomics research in Africa, with advice from community leaders and reassurance from health professionals and policy-makers, despite their apprehensions regarding healthcare systems.
