Article Text
Abstract
Background There is increasing attention to bio-banking in health research due to its value in providing rapid turnaround of research results. However, bio-banking in Sub-Saharan Africa is still in infancy and is wrought with many ethical and social-cultural challenges. There’s a dearth of research focusing on informed views of young people, who are likely to be the greatest consumers of health research information. At the KEMRI Wellcome Trust Research Programme (KWTRP) with nearly 1.5million biological specimens stored for over 30years, social science research investigated opinions about biobank/ing, and the ethical and social-cultural considerations from diverse stakeholders including youth.
Methods One-day deliberative consultation workshop with 44/47 Young Persons Advisory Group members from three secondary schools in Kilifi County. This aimed at informing and seeking opinions of the youth on the ethical and social-cultural issues of biobank/ing. Activities included discussions about DNA, KWTRP biobank tour, plenary and focus group discussions. Topics discussed included views on sample storage, sharing, consent, assent, and benefits of bio-banking. Data was transcribed, translated to English, and analyzed using thematic analysis.
Results Participants seemed to understand health research and supported bio-banking due to its associated benefits. They emphasized strict adherence to ethical guidelines on sample sharing, especially confidentiality. They supported initial parental consent for continued storage and sharing of samples collected for research while they were minors. Tracing participants who transit to adults, and recall biases were some of the reasons given for not re-contacting minors to re-affirm consent for continued secondary sample use. They also suggested that assent age should be lowered to 9–16years [as opposed to 13–17 years].
Conclusion Engaging the youth in bio-banking was regarded as an important step. Therefore, with careful considerations, youth can be engaged to demystify health research and bio-banking through well-tailored and suited engagement strategies.
Funders: Wellcome Trust, Global Health Bioethics Network and NIH Fogarty.