ELSIcon2022 • Paper • May 27, 2022
Olorunyomi Olorunsogbon, Muyiwa Adigun, Babatunde R. Ojebuyi, Joshua Akinyemi, Kolawole Wahab, Albert Alpalu, Fred S. Sarfo, Lukman F. Owolabi, Rabiu Musbahu, Reginald Obiako, Mayowa Ogunronbi, Michelle Nichols, Carolyn Jenkins, Ayodele Jegede, Raj Kalaria, Mayowa Owolabi, Bruce Ovbiagele, Oyedunni Arulogun, Rufus Akinyemi
ELSI issues surrounding the use and secondary use of bio-samples collected for stroke genomics research have not been fully explored in Africa. This study evaluated perspectives relating to use and re-use of donated bio-samples for stroke genomics research in Ghana/Nigeria. A cross sectional questionnaire survey was conducted among 986 stroke patients, 945 stroke caregivers and 1072 laypersons in 7 sites. Perception and attitude towards primary and secondary use of donated biosamples were explored. Mean ages of respondents were 59.79±17.4, 54.65±15.3 and 39.56 ±19.17 for stroke patient, stroke -free controls and community dwelling lay persons (CDLP) respectively. 56.1% of cases, 50.5% of controls and 49.7% of CDLP respectively were male. Majority of cases (84.8%), control (85.6%), and layperson (84.1%) agreed to the re-use of their donated biological specimens. Over half of cases (55.6%), controls (55.1%), and CDLP (54.3%) opined that there would be no need to re-contact them for consent for future use of their stored bio-samples. Willingness towards sample re-use was associated with living in rural setting (OR = 0.49, 95% CI = 0.34-0.72, p < 0.001), secondary education (OR = 1.71, 95% CI = 1.18-2.48, p =0.004), good genetic knowledge (OR = 1.94, 95% CI = 1.48-2.54, p< 0.001), good health-conscious behaviour (OR = 1.62, 95% CI = 1.10-2.39, p < 0.02). Conclusion- Majority agreed to secondary use of their donated bio-samples, without need to re-contact. Rural setting inversely associated while formal education, higher genetic knowledge and better health-conscious behaviour were directly associated with willingness towards sample re-use.