From Archetypes to Access: A Two-Axis Governance Framework and Decision-Support Tool for Rare Specimen Biobanking

INTRODUCTION: Biobanks fulfill their scientific and ethical mandates when collected specimens are used effectively. Access policies govern researcher eligibility, allocation, oversight, and intellectual property (IP) considerations. Despite their importance, access policies vary substantially and lack a unifying practical framework. OBJECTIVES: We sought to identify commonalities and areas of under-specification across access policies in surgically oriented, pediatric, and/or national biobanks to describe real-world practices and develop a typology of rare biospecimen governance. METHODS: We conducted a targeted scoping review of access policies from 32 biobanks identified from the Biobank Resource Centre Biobank Locator, with 19 providing sufficient governance information (59% response). Responses were coded using 10 domains researcher eligibility, oversight, allocation rules, data/sample coupling, industry access, fees, reporting, authorship, unused sample handling, and IP. Descriptive statistics and comparative analysis were used to identify patterned co-variation. A large language model (ChatGPT and OpenAI) was used to organize coded attributes and generate potential governance typologies, which were refined and verified by the authors. RESULTS: Governance attributes clustered along two conceptually distinct dimensions Access Orientation (facilitative vs. stewardship-oriented) and Allocation Logic (procedurally neutral vs. strategically prioritized). Their interaction produced four corresponding governance archetypes: Academic Commons, Rare Specimen Stewardship, Investigator-Led Facilitation, and Protected National Strategic Asset. Unused sample handling and IP were the most frequently under-specified domains. No novel structural configurations emerged after 13 cases. CONCLUSION: Access policy variations reflect coherent governance orientations that reveal differing institutional priorities and conceptions of the biobank's role in research facilitation and stewardship. By articulating two analytic axes and four archetypes, we provide a practical framework for interpreting policy differences across biobanks and identifying areas of under-specification. New and evolving biobanks can use this typology to align policies with their mission, scarcity constraints, and ethical obligations, supporting transparent decision-making and responsible and effective use of research specimens.

Authors

Institutions

Publication Details

Journal
Biopreservation and Biobanking
Published
2026-09-21
DOI
https://doi.org/10.1177/19475535261486946
Primary Topic
Ethics in Clinical Research
Type
article
Field-Weighted Citation Impact
0.00
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
article

From Archetypes to Access: A Two-Axis Governance Framework and Decision-Support Tool for Rare Specimen Biobanking

Paul Lerner, Thomas D. Walters, Michael J. Kim, Hien Q. Huynh et al.
Biopreservation and Biobanking
Ethics in Clinical Research
article

From Archetypes to Access: A Two-Axis Governance Framework and Decision-Support Tool for Rare Specimen Biobanking

Paul Lerner, Thomas D. Walters, Michael J. Kim, Hien Q. Huynh, Troy Perry, Eytan Wine
article en

Abstract

INTRODUCTION: Biobanks fulfill their scientific and ethical mandates when collected specimens are used effectively. Access policies govern researcher eligibility, allocation, oversight, and intellectual property (IP) considerations. Despite their importance, access policies vary substantially and lack a unifying practical framework. OBJECTIVES: We sought to identify commonalities and areas of under-specification across access policies in surgically oriented, pediatric, and/or national biobanks to describe real-world practices and develop a typology of rare biospecimen governance. METHODS: We conducted a targeted scoping review of access policies from 32 biobanks identified from the Biobank Resource Centre Biobank Locator, with 19 providing sufficient governance information (59% response). Responses were coded using 10 domains researcher eligibility, oversight, allocation rules, data/sample coupling, industry access, fees, reporting, authorship, unused sample handling, and IP. Descriptive statistics and comparative analysis were used to identify patterned co-variation. A large language model (ChatGPT and OpenAI) was used to organize coded attributes and generate potential governance typologies, which were refined and verified by the authors. RESULTS: Governance attributes clustered along two conceptually distinct dimensions Access Orientation (facilitative vs. stewardship-oriented) and Allocation Logic (procedurally neutral vs. strategically prioritized). Their interaction produced four corresponding governance archetypes: Academic Commons, Rare Specimen Stewardship, Investigator-Led Facilitation, and Protected National Strategic Asset. Unused sample handling and IP were the most frequently under-specified domains. No novel structural configurations emerged after 13 cases. CONCLUSION: Access policy variations reflect coherent governance orientations that reveal differing institutional priorities and conceptions of the biobank's role in research facilitation and stewardship. By articulating two analytic axes and four archetypes, we provide a practical framework for interpreting policy differences across biobanks and identifying areas of under-specification. New and evolving biobanks can use this typology to align policies with their mission, scarcity constraints, and ethical obligations, supporting transparent decision-making and responsible and effective use of research specimens.

Biopreservation and Biobanking
University of Alberta (CA), University of Toronto (CA), Hospital for Sick Children (CA)
Openalex Percentile: Top 8%
Ethics in Clinical Research
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.