Understanding the disconnect: A pilot study of public perception versus reality of corneal donation in India

Corneal blindness is one of the significant public health challenges in India. Approximately 100,000 corneal transplants are required every year to meet the clinical demand, which means about 200,000 donor corneas are required (considering 50% utilization rate).[1] During the past year (2024–2025), only 51,249 tissues were retrieved with about 50% (27,578) utilization, meeting 28% of the projected need.[2,3] This significant shortfall highlights a gap between demand and supply. It has been observed that antemortem surveys routinely indicate high levels of willingness to donate as they are typically captured during unstressed conditions.[4,5] However, the ground reality is usually different. In this study, we aimed to examine both public perception and real-world consent behavior. We collected a standard survey response via Google forms to understand the willingness of layperson to donate. Successively, we obtained reasons for refusing corneal donation during the postmortem consent at the hospital cornea retrieval program (HCRP). Out of 370 responses from the survey, although 87% reported awareness of corneal donation and 64% expressed willingness to donate, only 51% were actually found to be registered donors. Here, the gap between awareness, willingness/intent, and actions shows that awareness or willingness alone may not necessarily translate into an actionable change. Further, the outcomes did not highlight otherwise considered traditional barriers such as religious concerns (1.4%), misinformation, or distrust in the medical system (each <1%), which means that there is an obvious shift in mindset toward donation. Higher registration rates among younger (70%) and educated individuals (Bachelor’s and beyond, >70%) were observed, indicating the requirement of continuous education for donation among younger individuals. Consecutively, although a high willingness and awareness was recorded in the antemortem survey study, ground data showed a refusal rate of 35% (125 out of 345 cases) approached by the counsellors in HCRP postmortem. The leading causes of refusal included unavailability of the legal representative (36.1%), sheer disinterest (30.3%), emotional distress (25.4%), religious taboo (6.6%), and language barriers (1.6%). Our study therefore highlights key perceived versus real-world limitations for cornea donation in India [Table 1]. One of the major outcomes is the legal requirement to recognize donor pledges/first-person consent as individual autonomy and not completely rely on the wishes of next-of-kin. This gap in legal framework appears contributing to lost donation opportunities. These findings reinforce that consent is rather a collective decision, influenced by grief, communication, and immediate logistics, than an individual wish.Table 1: Interpretation of differences between perceived and actual barriers for corneal donation in IndiaWhile our study is limited by its sample size, and does not necessarily represent the entire Indian population, it does indicate critical ‘ground-zero’ realities and highlight that surveys taken under nonstressful conditions may not necessarily reflect the real-world data obtained during the grieving period. The findings of this study show that awareness alone may not be sufficient to improve corneal donation. Strategies that align intent with outcome are strongly needed. This can be achieved via implementing on-ground communication, enhancing the consent process, improving HCRP via advanced policy frameworks specifically toward recognizing the pledges of the donor, and digital approval of next-of-kin when unavailable physically. A well-coordinated effort that bridges awareness to actual donation would improve the donation rates and achieve sustainable impact. Author contributions Concept: M.P., A.R., R.N.; Design: M.P., A.R., R.N., V.R.; Definition of intellectual content: N/A; Literature search: M.P., A.R., R.N., U.P.S.P., B.R.R.; Clinical studies: N/A; Experimental studies: N/A; Data acquisition: M.P., A.R., R.N., U.P.S.P., B.R.R.; Data analysis: M.P., A.R., R.N., U.P.S.P., V.R.; Statistical analysis: M.P., A.R., U.P.S.P., V.R.; Manuscript preparation: M.P., A.R., R.N., U.P.S.P., B.R.R., V.R.; Manuscript editing: M.P., A.R., R.N., N.S., S.D.; Manuscript review: M.P., A.R., R.N., U.P.S.P., B.R.R., V.R., N.S., S.D. Appendix 1. Survey questionnaire - https://docs.google.com/forms/d/1QjGU2d10v1_nbOkfrQD4oUUaiHM6DRW5zl2UTSIIfU8/edit Disclosure This study was conducted as part of Dr. Mohit Parekh’s participation in the ARVO Science Communication Fellowship Program 2025.