Awareness, Attitudes, and Expectations of Indian Cancer Patients and Their Caregivers on Hereditary Cancers and Genetic Testing at a Tertiary Cancer Centre in India.
TL;DR
This first pan-cancer AAE study from an LMIC reveals critical gaps in genetic literacy and a clear affordability threshold for germline genetic testing among Indian cancer patients and caregivers.
Abstract
Barriers to germline genetic testing (GT) for cancer include cost, limited genetic literacy, and socio-cultural factors. This study comprehensively evaluated awareness, attitudes, and expectations (AAE) regarding hereditary cancer and GT among Indian cancer patients and caregivers across diverse adult and pediatric cancers. A prospective cross-sectional survey was conducted at the Cancer Genetics Clinic, Tata Memorial Centre, Mumbai between 2023 and 2025. Five hundred participants (227 patients, 273 caregivers) were recruited equally across breast, gynecological, colorectal, central nervous system, and pediatric cancers. A validated 13-item questionnaire administered in four languages assessed hereditary cancer awareness, knowledge of GT implications, disclosure attitudes, and expectations regarding cost and turnaround time (TAT). Binary logistic regression identified predictors of awareness and acceptability. Only 45.8% of participants were aware that cancer can be hereditary. Biology education, family history of cancer, and breast/gynecological cancer diagnosis were significant positive predictors of awareness. Among those aware of hereditary cancer, 36.6% misattributed familial clustering to shared habits rather than germline pathogenic variants. Only 29.9% identified GT as the means to confirm hereditary cancer. Regarding GT implications, 41.1% recognized its impact on treatment, screening, and family risk simultaneously. Over half (54.8%) found the current GT cost of ₹15,000-20,000 unacceptable, with a mean willingness-to-pay threshold of ₹9903 (~USD 116). Conversely, 59.9% accepted a 3-6-week TAT. Non-disclosure of cancer diagnosis beyond immediate family was associated with non-English language preference suggesting socio-cultural barriers. Despite low awareness, 91.6% of participants consented to genetic testing following counseling. This first pan-cancer AAE study from an LMIC reveals critical gaps in genetic literacy and a clear affordability threshold for GT. Subsidizing testing to approximately ₹10,000, expanding regional-language digital health education, and strengthening pre-test counseling are essential to mainstream genetic services in India. Trial Registration: This study is registered at Clinical Trials Registry- India CTRI/2022/05/042558 on 13.05.2022.