Consent architecture in biobanking: ethical attitudes and consent preferences among people with cancer and caregivers

Abstract

Ethical and socially accountable biobanking depends on public trust and informed consent. Understanding how people with cancer and caregivers view biospecimen use is essential for designing consent models that respect autonomy and reflect cultural values. This study examined consent preferences, motivations, and ethical attitudes toward the research use of tumor tissue among people with cancer and their caregivers in Türkiye. A multicenter cross-sectional survey was conducted in six tertiary oncology centers. Adult people with cancer and caregivers were interviewed face-to-face using a structured questionnaire assessing consent preferences, willingness to donate biospecimens, ethical concerns, and awareness of data protection laws. Descriptive statistics and chi-square tests were used to evaluate group differences. Among 965 participants (median age 52, 49.7% male), 58.9% were people with cancer and 39.3% were caregivers. Most participants (64.7%) expressed no objection to the research use of their biospecimens, and altruistic motivation was high (74.6%). Broad consent was preferred by 59.6%, although 56.7% still favored written documentation. 38.2% believed that diagnostic tissue belonged to the hospital. Broad consent preference was significantly associated with higher income, better health, smaller household size, and greater awareness of the Personal Data Protection Law (all p < .05). Participants aged 50 years or older and males more frequently supported the use of stored samples without re-consent and were more willing to undergo research-only biopsies. People with cancer and caregivers generally support biospecimen-based research, but many still desire written or study-specific consent, reflecting a need for trust, transparency, and personal control. Strengthening legal literacy, improving communication about sample governance, and offering flexible consent models may enhance ethical participation in biobanking. These findings highlight opportunities for culturally responsive consent practices that balance research efficiency with participant autonomy.