We recognize a growing literature which argues [in whole or in part] that norms requiring the individual, prior, free, express and informed consent of persons to be involved in research must accommodate notions which integrate terms such as ‘community-driven’, ‘decolonized’, or ‘culturally-appropriate’ and which insist that consent processes “prioritize local/indigenous values and protocols.” As an editorial policy, we have decided to group such literature together in this section of the digest.
More broadly, we recognize that this literature raises critically important issues around consent integrity. Our Center for Informed Consent Integrity is actively developing a position on this matter, mindful of core guidance in research involving human participants overall, and selected instruments such as the Universal Declaration on Bioethics and Human Rights [2005] which notes:
Article 12. Respect for cultural diversity and pluralism
The importance of cultural diversity and pluralism should be given due regard. However, such considerations are not to be invoked to infringe upon human dignity, human rights and fundamental freedoms, nor upon the principles set out in this Declaration, nor to limit their scope.
We will keep readers advised of our progress. If you have an interest in participating in our working group, please contact Paige Fitzsimmons [paige.fitzsimmons@ge2p2global.org].
Balancing Ethics and Culture: A Scoping Review of Ethico-Cultural and Implementation Challenges of the Individual-Based Consent Model in African Research
Richard Appiah, Giuseppe Raviola, Benedict Weobong
Journal Of Empirical Research On Human Research Ethics, 18 March 2024
Abstract
Objective
This review explores the ethico-cultural and implementation challenges associated with the individual-based informed consent (IC) model in the relatively collectivistic African context and examines suggested approaches to manage them.
Methods
We searched four databases for peer-reviewed studies published in English between 2000 to 2023 that examined the ethico-cultural and implementation challenges associated with the IC model in Africa.
Results
Findings suggest that the individual-based IC model largely misaligns with certain African social values and ethos and subverts the authority and functions of community gatekeepers. Three recommendations were proffered to manage these challenges, that researchers should: adopt a multi-step approach to IC, conduct a rapid ethical assessment, and generate an African-centered IC model.
Conclusions
A pluriversal, context-specific, multi-step IC model that critically harmonizes the cultural values of the local population and the general principles of IC can minimize ethics dumping, safeguard the integrity of the research process, and promote respectful engagement.
Culturally Competent Respect For The Autonomy Of Muslim Patients: Fostering Patient Agency By Respecting Justice
Kriszta Sajber, Sarah Khaleefah
Theoretical Medicine and Bioethics, 7 February 2024
Abstract
Although Western biomedical ethics emphasizes respect for autonomy, the medical decision-making of Muslim patients interacting with Western healthcare systems is more likely to be motivated by relational ethical and religious commitments that reflect the ideals of equity, reciprocity, and justice. Based on an in-depth cross-cultural comparison of Islamic and Western systems of biomedical ethics and an assessment of conceptual alignments and differences, we argue that, when working with Muslim patients, an ethics of respect extends to facilitating decision-making grounded in the patient’s justice-related customs, beliefs, and obligations. We offer an overview of the philosophical contestations of autonomy-enhancing practices from the Islamic tradition of biomedical ethics, and examples that demonstrate a recommended shift of emphasis from an autonomy-centered to a justice-focused approach to culturally competent agency-promotion.
Center for Informed Consent Integrity 