Informed consent in global outreach

Editor’s Note:
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].

Informed consent in global outreach
Book Chapter
Meseret E. Kassa, Morris E. Hartstein
Global Oculoplastics: A Guide to the Care of Patients in Resource-Poor Environments, 2025; pp 93-95
Abstract
Informed consent in resource-poor settings is equally important as in Western settings. However, language and cultural barriers exist, making it much more challenging to obtain. This chapter will discuss the potential barriers, enhance understanding and respect of the culture, and discuss methods to modify the process in order to successfully obtain informed consent in resource-poor environments.

Editor’s note: The barriers discussed in this chapter include understanding and respecting community norms, cultural and religious variations, communities with strong social interdependence family structure, informed consent for women, deference to physician, rejection of medical interventions, confidentiality, justice, and patient anonymity, and language and illiteracy.