Sickle Cell Disease Genomics of Africa (SickleGenAfrica) Network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria and Tanzania. Issue 7 (23rd July 2021)

• Record Type: Journal Article
• Authors: Anie, Kofi A; Olayemi, Edeghonghon; Paintsil, Vivian; Owusu-Dabo, Ellis; Adeyemo, Titilope Adenike; Sani, Mahmoud U; Galadanci, Najibah Aliyu; Nnodu, Obiageli; Tluway, Furahini; Adjei, David Nana; Mensah, Peter; Sarfo-Antwi, Joseph; Nwokobia, Henry; Gambo, Awwal; Benjamin, Adebola; Salim, Arafa; Osae-Larbi, Judith A; Ofori-Acquah, Solomon Fiifi
• Other Names: author non-byline.; Kuma Amma Benneh-Akwasi author non-byline.; Ghansah Anita author non-byline.; Segbefia Catherine author non-byline.; Adjei David Nana author non-byline.; Olayemi Edeghonghon author non-byline.; Awandare Gordon author non-byline.; Ofori-Acquah Solomon F author non-byline.; Kudzi William author non-byline.; Owusu-Dabo Ellis author non-byline.; Painstil Vivian author non-byline.; Kuliya-Gwarzo Aisha author non-byline.; Shehu Adullahi author non-byline.; Musa Baba author non-byline.; Sani Mahmoud author non-byline.; Galandanci Najibah Aliyu author non-byline.; Abimiku Alashle author non-byline.; Adeyefa Ameh author non-byline.; Nnodu Obiageli E. author non-byline.; Akinsete Michael author non-byline.; Kalejaiye Olufunto author non-byline.; Adeyemo Titilope author non-byline.; Tluway Furahini author non-byline.; Ndobho Flora author non-byline.; Mgaya Josephine author non-byline.; Makani Julie author non-byline.; Nkya Siana author non-byline.; Mulder Nicola author non-byline.; Anie Kofi A author non-byline.; Stiles Jonathan author non-byline.; Villanueva Flordeliza author non-byline.; Ghosh Samit author non-byline.; Ofori-Acquah Solomon author non-byline.; Minster Ryan author non-byline.;
• Is Part Of: BMJ open. Volume 11:Issue 7(2021)
• Publication Date: 2021-07-23
• Subjects: haematology -- medical ethics -- public health -- qualitative research; Medicine -- Research -- Periodicals; 610.72
• DOI: 10.1136/bmjopen-2020-048208
• Languages: English
• ISSNs: 2044-6055

Abstract

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.