Views of University Students in Jordan towards Biobanking

Abstract

BackgroundBiobanks are considered a primary mean of supporting contemporary research, in order to deliver personalized and precise diagnostics with public acceptance and participation as a corner stone for their success.AimsThis study aims to assess knowledge, perception, and attitudes towards biomedical research and biobanking among students at the University of Jordan.MethodologyAn online questionnaire was designed, developed, and piloted. It was divided into 5 sections that included questions related to issues of biomedical research and biobanking as well as factors influencing decision to participate.ResultsResponses from 435 students revealed that 52.9% previously heard of biobanks. There was overwhelming acceptance for participation in biomedical, genetic, and biobanking research. A blood sample was the most preferred for donation. Protection of privacy, a consent prior to donation, approval of an ethics committee, and trust towards researchers were the most important factors associated with willingness to participate. On the other hand, vagueness of the type of research performed on samples and not receiving research results had a negative connotation. There was no clear agreement on the type of consent preferred by students, but to be contacted and informed of research results was preferred by the majority. Students also preferred disposal of samples and information when deciding to withdraw from participation.ConclusionThere is strong enthusiasm among students to participate in biomedical research and biobanking with all rights reserved thus providing hope for a very promising future in Jordan.

Biobanking and Consenting to Research: a Qualitative Thematic Analysis of Young People’s Perspectives

“…4 This suggests that reconsent may be necessary to justify use of the samples beyond childhood.Although aforementioned ethical issues are under debate, the literature mainly focuses on the theoretical debate 4,11,12 or involves perspectives of parents or legal guardians 5,13,14 , practitioners 9 , the critically ill 8,15 or adolescents already participating in research involving biobanks 16,17 . Perspectives of the general population mainly involves adults, with university students being closest to the paediatric population 18,19 . Literature on the CYP's perspective is surprisingly sparse, despite being fundamental to the ongoing ethical debate.This study aimed to assess CYP perspectives in the community towards prospective consent, deferred consent, reconsent and assent for biobanked samples.…”