Cancer Patients and Caregivers Back Biobank Research but Still Want Paper Consent

Every year, millions of tissue samples removed during cancer diagnosis and treatment flow into biobanks, where they become the raw material for genomic discovery, drug development, and precision oncology. Yet the ethical architecture governing those samples, the consent models that determine who may use them, for what purpose, and under what conditions, remains one of the most contested questions in modern biomedical research. A new multicenter survey from Türkiye offers one of the most detailed snapshots to date of how people with cancer and their caregivers actually think about these questions, and the results reveal a striking tension between enthusiasm for science and a persistent desire for formal, documented control.

The study, published in BMC Cancer, surveyed 965 adults across six tertiary oncology centers in Türkiye. Participants included 58.9 percent people with cancer and 39.3 percent caregivers, with a median age of 52 and a nearly even gender split at 49.7 percent male. Researchers conducted face-to-face interviews using a structured questionnaire that probed consent preferences, willingness to donate biospecimens, ethical concerns, and awareness of data protection laws. The team then applied descriptive statistics and chi-square tests to identify differences between groups, providing a quantitative map of attitudes that has often been discussed only in abstract ethical terms.

The headline finding is one that biobank operators and research ethicists will welcome: support for biospecimen research is strong. Nearly two-thirds of participants, 64.7 percent, expressed no objection to the research use of their biospecimens, and altruistic motivation ran even higher, with 74.6 percent citing the desire to help others as a driving reason to donate. In a population grappling with a life-threatening diagnosis, this willingness to contribute to the collective scientific enterprise underscores how deeply the idea of research as a social good resonates, even among those with the most personal stake in the medical system.

But the consent preferences tell a more complicated story. A majority, 59.6 percent, said they preferred broad consent, the model in which a single authorization covers future, currently unspecified research uses of stored samples. Broad consent has become the workhorse of large-scale biobanking precisely because it spares researchers from returning to participants for every new project, an administrative burden that would otherwise paralyze long-term studies. Yet at the same time, 56.7 percent of respondents still favored written documentation of their consent. In other words, many participants are comfortable granting wide latitude to researchers in principle, but they want that grant recorded on paper, a tangible artifact of trust that they can see, sign, and keep.

This dual preference exposes a conceptual gap that consent theorists have debated for years: the difference between the scope of permission and the form of its expression. Broad consent addresses scope, allowing samples to be used across many studies without repeated re-contact. Written documentation addresses form, providing a formal, legally recognizable record of the participant’s decision. The survey suggests these are not competing demands but complementary ones. People appear willing to trade granular control over future uses in exchange for the reassurance of a documented, deliberate act of authorization. For biobanks, the implication is that streamlining consent scope without preserving its formal weight may erode the very trust that makes donation possible.

Perhaps the most surprising number in the study concerns ownership. When asked who they believed owned their diagnostic tissue, 38.2 percent of participants said the hospital. Nearly four in ten respondents, in other words, considered that tissue removed during their care belonged to the institution rather than to themselves. This belief has real consequences for how consent is understood: if a sample is perceived as institutional property, then permission to use it in research may feel less like exercising personal autonomy and more like acquiescing to a default. The finding highlights how little many patients know about the actual legal status of excised tissue, which in most jurisdictions occupies a murky zone between personal property and clinical material.

The survey also identified clear demographic patterns in consent attitudes. Preference for broad consent was significantly associated with higher income, better self-reported health, smaller household size, and greater awareness of the Personal Data Protection Law, Türkiye’s comprehensive data privacy statute, with all of these associations reaching statistical significance at p less than .05. The link with legal literacy is particularly notable. Participants who knew more about how their personal data is protected were more comfortable granting broad permission for the research use of their tissue, suggesting that familiarity with privacy frameworks reduces anxiety about unknown future uses. Legal awareness, in this reading, functions as a form of epistemic security: people who understand the rules governing data are more willing to extend trust to the system that applies them.

Age and gender shaped attitudes as well. Participants aged 50 or older and male participants more frequently supported the use of stored samples without re-consent, and they were also more willing to undergo biopsies performed solely for research purposes, a more invasive ask than simply permitting the use of tissue already removed during diagnosis. Willingness to accept a research-only biopsy represents the upper end of the donation spectrum, involving a procedure with no direct clinical benefit to the participant. That older and male respondents were more open to this level of contribution may reflect generational differences in attitudes toward medical authority, differing levels of engagement with privacy debates, or cultural norms about bodily autonomy that vary across cohorts and genders.

The study was approved by the Ankara University Faculty of Medicine Human Research Ethics Committee and conducted in accordance with the Declaration of Helsinki and American Association for Public Opinion Research standards, with informed consent obtained from all participants before enrollment. The research received no specific grant from any funding agency, public, commercial, or not-for-profit, positioning it as an investigator-driven effort to ground consent policy in empirical evidence rather than assumption. That methodological grounding matters, because consent models are often designed by ethics boards and regulators with limited direct input from the populations they affect, particularly in regions outside North America and Western Europe where most biobanking ethics research has historically been conducted.

The authors conclude that people with cancer and caregivers generally support biospecimen-based research, but that many still desire written or study-specific consent, reflecting a need for trust, transparency, and personal control. Their recommendations center on three levers: strengthening legal literacy among patients, improving communication about how samples are governed, and offering flexible consent models that can accommodate different levels of comfort. The last point may prove the most actionable. Rather than forcing a choice between narrow, study-by-study consent and an all-or-nothing broad authorization, hybrid architectures, such as broad consent paired with written documentation and periodic opportunities to update preferences, could capture the efficiency that large-scale research demands while honoring the documented, deliberate control that participants clearly want.

For the international biobanking community, the findings arrive at a moment when genomic databases are growing exponentially and artificial intelligence is multiplying the ways stored samples and linked health data can be analyzed. Consent frameworks designed for a slower era of research are under strain everywhere, and evidence about what patients actually prefer, especially from culturally specific contexts like Türkiye, is essential for building systems that are both efficient and legitimate. This survey suggests that the raw material of trust is already there: most people facing cancer want their tissue to help others. The task for researchers and policymakers is to design consent architectures that match that generosity with the transparency and formal recognition it deserves, so that the biobanks of the coming decade rest not just on legal permission but on genuine, well-informed, and documented public confidence.

Subject of Research: Ethical attitudes and consent preferences for biobanking among people with cancer and caregivers

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

Article References: Kubilay Tolunay, P., Erol, C., Kahraman, S., Yıldız Tacar, S., Özcan, E., Buğdaycı Başal, F., Köse, F., Şendur, M. A. N., Tural, D., Çiçin, İ., Öksüzoğlu, B., Kılıçkap, S., & Ürün, Y. (2026). Consent architecture in biobanking: ethical attitudes and consent preferences among people with cancer and caregivers. BMC Cancer. https://doi.org/10.1186/s12885-026-17118-4

Image Credits: AI Generated

DOI: 10.1186/s12885-026-17118-4

Keywords: biobanking, informed consent, broad consent, biospecimen research, cancer, caregivers, medical ethics, tumor tissue, data protection, patient attitudes, trust in research, Türkiye