Date of Award

10-2025

Degree Type

Thesis

Degree Name

Master of Bioethics

First Advisor

Dr Kulsoom Ghias

Second Advisor

Dr Paul Ndebele

Third Advisor

Dr Aamir Jafarey

Department

Educational Development

Abstract

Background: Biobanking is essential to the development of genomic research since it offers a collection of biologically significant samples and information. Nevertheless, biobanking remains a nascent field in Pakistan and is culturally biased, poorly informed, and ethically ambiguous, which affects participant involvement and regulation. Regardless of the worldwide growth of biobanks, there are minimal empirical studies concerning the perception of biobanking by Pakistani academic stakeholders, specifically in terms of the level of their knowledge, attitudes, and ethical issues. This insufficient contextualized research prevents policy making and confidence of the general public in genomic research.
Objective: The purpose of this study was to examine the knowledge, attitudes, and ethical considerations of faculty and students from two Pakistani academic institutions about biobanking for genomic research by investigating cultural, religious, and social factors influence on ethical decision-making and willingness to participate; and identifying culturally and contextually appropriate ethical measures that may improve trust, transparency, and stakeholder engagement in biobanking projects for genomic research.
Methodology: The study was a convergent mixed-methods study that combined both quantitative and qualitative data through the Biobanking Attitudes and Knowledge Survey (BANKS) (n = 59) quantitative data and semi-structured interviews and focus group discussions with 20 participants at Aga Khan University and University of Peshawar. The quantitative data were statistically analyzed, whereas the qualitative data were subjected to thematic analysis.
Key Findings: The results showed that there is moderate knowledge, yet a positive attitude towards biobanking, although there were no significant differences between the faculty and students on knowledge (p = 0.71), attitudes (p = 0.67) and intent to participate (p = 0.62). Five qualitative themes related to biobanking for genomics research were identified: knowledge and understanding, influence of culture, religion, family and gender on autonomy and consent, privacy, confidentiality and trust, motivation and barrier, ethical understanding and informed consent. The ethical argument to participate or not to participate was mostly communitarian and the development of science, aligned with religious moral principles and overall common good.
Implications: This thesis highlights the importance of culturally competent models of consent, open governance structure, and bioethics education on improving trust and engagement in biobanking. Although biobanking is positively perceived, the moderate level of knowledge suggests that the support might not be v well informed. The importance of genomic literacy is therefore paramount in ensuring that the process of engaging in biobanking is informed and not ignorant and misguided. Therefore, a hybrid ethical framework is recommended, which will address Pakistan’s ethical context as an LMIC practicing genomic research with a background of global bioethical standards that overlap with strong religious and cultural values.

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Last Page

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