The future of medical breakthroughs lies not in stricter forms, but in stronger partnerships between biobanks and their participants.
When you think of tissue banking, what comes to mind? Perhaps you imagine sterile labs with frozen samples, or recall signing a lengthy consent form before a medical procedure. For decades, informed consent has been the ethical cornerstone of medical research—a one-time signature meant to protect participants while enabling science. But as biobanks evolve into long-term research platforms holding samples for decades, this traditional model is showing its limits.
The challenge is straightforward: how can participants consent today to research that hasn't been invented yet? Longitudinal biobanks that follow populations over many years face a particular dilemma. The technologies and research questions of 2040 are impossible to fully predict in 2025. Yet, the traditional solution of repeatedly going back to participants for new consent is both impractical and potentially disruptive to valuable research.
Recent studies reveal a surprising truth: participants themselves are leading the charge toward a new understanding of consent. Rather than demanding control through endless paperwork, they're envisioning something different—a ongoing research relationship built on trust, transparency, and shared purpose. This shift from transaction to relationship could unlock medical breakthroughs while respecting participant autonomy in more meaningful ways.
Participants are moving beyond transactional consent toward relationship-based research partnerships.
Biobanks are evolving from sample repositories to long-term research platforms.
Tissue banking involves collecting, processing, storing, and distributing human biological materials like blood, tissue, and cells for medical research and treatment. These repositories range from population-scale biobanks following hundreds of thousands of people over decades to cord blood banks preserving stem cells for potential future therapies 2 4 . They serve as crucial infrastructure for studying diseases, developing treatments, and advancing personalized medicine.
Traditional informed consent requires researchers to specify exactly how samples will be used—a model that works well for single, well-defined studies but struggles with biobanks designed for future, unspecified research 7 .
The fundamental problem is what experts call the "one-off consent model"—where participants agree to specific research activities at the outset, often many years before novel research technologies and questions emerge 1 . This creates significant ethical and practical challenges:
Technological advancements enable new kinds of analyses impossible to anticipate when participants initially join biobanks.
Regulators must determine whether new research fits within consent language written years or decades earlier, often requiring careful legal scrutiny 1 .
Participants may be unaware of what they agreed to, creating potential for surprise or discomfort with how their samples are used.
The limitations of traditional consent became strikingly clear in a recent UK Biobank case study. UK Biobank is a long-term prospective health research study that recruited 500,000 people aged 40-69 between 2006-2010 1 . Participants provided biological samples and agreed to ongoing access to their medical records, but the consent forms didn't explicitly mention accessing stored tissue samples that might exist within those records.
Fifteen years after recruitment, UK Biobank sought to access tissue samples stored in NHS pathology laboratories. The Human Tissue Authority (HTA) raised concerns, noting that approximately half of surveyed participants didn't realize their medical records might contain stored tissues 1 . This prompted a critical ethical question: did the original consent cover this use, or was new consent required?
UK Biobank recruits 500,000 participants aged 40-69 with initial consent forms.
Biobank seeks to access stored tissue samples from NHS pathology labs.
HTA raises concerns about participant awareness, prompting focus group study.
Rather than assuming what participants wanted, UK Biobank's Ethics Advisory Commission conducted 12 focus groups with 94 participants to explore their actual perspectives. The methodology was carefully designed to capture nuanced views through both individual and group exercises 1 .
The results revealed a striking shift in perspective that challenges conventional wisdom about participant expectations.
| Characteristic | Details |
|---|---|
| Age | 40-69 at recruitment |
| Location | Across England, Scotland, Wales |
| Group Size | 87 in-person, 7 online |
| Data Collection | Nov 2022-Aug 2023 |
Table 1: UK Biobank Focus Group Demographics
The focus groups revealed that participants located responsibility for research decisions with the biobank, rather than seeking personal control through repeated consent 1 . Rather than viewing their initial consent as a one-time transaction, they saw it as what researchers called the "opening act" for an ongoing research relationship with the biobank.
Participants expressed confidence in UK Biobank's ethical oversight and preferred the organization to make responsible decisions about research uses.
Regular communication was valued more highly than repeatedly being asked for consent for new studies.
Participants identified with the broader goals of the research and wanted their contributions to be used effectively.
"Focussing on the ongoing research relationship—and the practices that sustain it—is more important than the specific wording on consent forms signed at recruitment" 1 .
The UK Biobank findings are not isolated. Recent international research reveals similar attitudes across different cultures and healthcare systems.
In Norway, a survey of patient representatives found strong support (66.2%) for a general consent model that would allow biological material and health data to be used for various projects across medical disciplines 6 . Only 21% supported maintaining the current broad consent model. Significantly, most respondents (65%) believed biological material should be stored for research purposes without time restrictions 6 .
66.2% of Norwegian patient representatives
65% support indefinite storage for research
In Japan, research reveals a more complex picture. While approximately 70% of biobank stakeholders view re-consent as necessary, only 25% of biobanks handling pediatric samples actually obtain it 5 . This gap between ethical ideals and practical implementation highlights the logistical challenges of traditional consent models, especially for pediatric research where participants eventually become adults who may wish to reaffirm or withdraw their participation.
70% of Japanese biobank stakeholders
Only 25% of pediatric biobanks obtain re-consent
Moving from transactional consent to relationship-based approaches requires new tools and frameworks. This "toolkit" represents the essential components for building and maintaining ethical research relationships in modern biobanking.
Enable ongoing engagement with participants through regular updates, newsletters, and digital portals.
Ensure ethical oversight of research uses through ethics committees and transparent review processes.
Allow participants to update choices over time through digital preference portals and periodic check-ins.
Build trust through openness with accessible information about research outcomes and impacts.
Table 3: Essential Components for Relationship-Based Consent
The relationship-based consent model isn't merely theoretical—it's already influencing practice and policy. The recent updates to NHG DSRB Informed Consent Form Templates in Singapore, for instance, now clarify that participant data from other institutions stored in electronic medical records may be accessed and utilized when relevant to studies 3 . This reflects a practical application of broader consent principles within established ethical frameworks.
The cord blood and tissue banking industry, valued at billions globally, illustrates how consent models directly impact research scalability 2 . As this sector consolidates—with major players like PBKM FamiCord, CooperSurgical, and Sanpower Group controlling significant market shares—the efficiency of consent processes becomes increasingly important for enabling large-scale research while maintaining public trust.
Despite promising developments, significant challenges remain:
Major players in cord blood and tissue banking:
Global industry valued at billions 2
The reconfiguration of tissue banking consent represents far more than an administrative update—it signals a fundamental shift in how we conceptualize the relationship between research participants and scientific progress. The restricted debate that has long focused on the specific wording of consent forms is giving way to an enriched conversation about trust, responsibility, and partnership.
What emerges from recent research is a clear message: participants want to be partners in research, not merely subjects. They're willing to provide broader permission when it's balanced with transparent governance, meaningful communication, and respect for their ongoing relationship with research institutions.
As we look toward the future of medical breakthroughs—from personalized cancer treatments to regenerative therapies for neurological conditions—the quality of these research relationships may prove just as important as the quality of the frozen samples themselves. By reconstituting consent as an ongoing dialogue rather than a single signature, we open the door to more ethical, more efficient, and ultimately more successful medical research for everyone.