The Biobanking Article of the Week

Biobanking article of the week–blog will weekly highlight biobanking related articles with interesting topics or burning questions.

 

Biobanking article of the week (27/2017)

Article: Organization of BBMRI.pl: The Polish Biobanking Network

Małgorzata Witoń, Dominik Strapagiel, Joanna Gleńska-Olender, et al.

Biopreservation and Biobanking Volume 15, Number 3, 2017

DOI:10.1089/bio.2016.0091

 

Why I read it: To get an update on the situation of Polish biobanking field.

 

Short summary: The paper presents a status update, the reasoning and planned milestones for creating the Polish biobanking network, BBMRI.pl.

 

Who should read this: Everyone working with biobanks, especially those interested in national and international collaboration.

 

 

Biobanking article of the week (24/2017)

Article: A Survey of the Current Situation of Clinical Biobanks in China

Haiyan Li, Mingyu Ni, Peng Wang, and Xiaomin Wang

Biopreservation and Biobanking Volume 15, Number 3, 2017

DOI:10.1089/bio.2016.0095

 

Why I read it: To get an update on what’s going on in the Chinese field of biobanking.

 

Short summary: The paper presents the results of a survey for 42 clinical biobanks in China involving their management systems, sharing mechanisms, QC-systems and IT-management systems.

 

Who should read this: Everyone working with biobanks, especially those interested in clinical biobanks and the development of the biobanking field in China.

 

 

Biobanking article of the week (23/2017)

Article: Crisis Management for Biobanks

Alison Parry-Jones, Jarle Hansen, Daniel Simeon-Dubach, and Roger Bjugn

Biopreservation and Biobanking Volume 15, Number 3, 2017

DOI:10.1089/bio.2016.0048

 

Why I read it: To gain better perspective on how to prepare for disruptions and possible crisis with biobanks.

 

Short summary: The review article explains how biobanks can develop and maintain a crisis management plan.

 

Who should read this: Everyone working with biobanks, especially those interested in management issues.

 

 

Biobanking article of the week (21/2017)

Article: Ethical Legal and Social Issues of Biobanking: Past, Present, and Future

Marianna J. Bledsoe

Biopreservation and Biobanking Volume 15, Number 2, 2017

DOI:10.1089/bio.2017.0030

 

Why I read it: To gain a more comprehensive perspective of the development of ethical, legal and social issues  in the long run.

 

Short summary: The review article presents views on how the ethical, legal and social issues of biobanking have developed from past through present and what we should expect in the future.

 

Who should read this: Everyone working with biobanks, especially those interested in ethical, legal and social issues.

 

 

Biobanking article of the week (18/2017)

Article: Lessons Learned from Biospecimen Shipping Among the Human Heredity and Health in Africa Biorepositories

Talishiea Croxton, Carmen Swanepoel, Henry Musinguzi, et al.

Biopreservation and Biobanking Volume 15, Number 2, 2017

DOI:10.1089/bio.2017.0009

 

Why I read it: To learn about the transnational access process in Africa.

 

Short summary: The article presents a pilot study done to assess trans-African process of access to samples and data.

 

Who should read this: Everyone working with biobanks, especially those interested in the access process and transnational collaboration.

 

 

Biobanking article of the week (16/2017)

Article:  Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US

Saskia C. Sanderson, Kyle B. Brothers, Nathaniel D. Mercaldo, et al.

The American Journal of Human Genetics 100, 414-427, March 2, 2017 DOI:10.1016/j.ajhg.2017.01.021

 

Why I read it: Because participation rates are a good indicator of biobanks public trust and a good participation rates make the biobanks viable.

 

Short summary: The article presents a study about willingness to participate in a biobank using different consent and data sharing models.

 

Who should read this: Everyone working with biobanks, especially those interested in consent issues and improving participation rates.

 

 

Biobanking article of the week (15/2017)

Article: Community recommendations on biobank governance: Results from a deliberative community engagement in California

Dry SM, Garrett SB, Koenig BA, Brown AF, Burgess MM, Hult JR, et al.

Journal of Epidemiology 27 (2017) s9-s21. DOI:10.1371/journal.pone.0172582

 

Why I read it: Because stakeholder engagement is important for gaining justification and for increasing participation rates and interest towards biobanks.

 

Short summary: The article presents a qualitative study to describe community recommendations for biorepository governance and oversight.

 

Who should read this: Everyone working with biobanks, especially those interested in governance issues and stakeholder engagement.

 

 

Biobanking article of the week (14/2017)

Article: Cross-sectional analysis of BioBank Japan clinical data: A large cohort of 200,000 patients with 47 common diseases

Makoto Hirata, yoichiro Kamatani, Akiko Nagai et al.

Journal of Epidemiology 27 (2017) s9-s21. DOI:10.1016/j.je.2016.12.003

 

Why I read it: To learn what kind of epidemiological studies are being done with the data from BioBank Japan.

 

Short summary: The article presents a study utilizing BioBank Japan to assess the association between family history and disease development.

 

Who should read this: Everyone working with biobanks.

 

 

Biobanking article of the week (13/2017)

Article: Pediatric Issues in Return of Results and Incidental Findings: Weighing Autonomy and Best Interests

Ingrid A. Holm.

Genetic Testing and Molecular Biomarkers, Volume 21, Issue 3: March 1, 2017.

DOI:10.1089/gtmb.2016.0414

 

Why I read it: To learn more about the special issues with incidental findings on the pediatric side.

 

Short summary: The article presents special pediatric issues of returning the results and proposes a dynamic model which “takes into consideration the child's evolving role in consenting” and that can be modified to match with national contexts.

 

Who should read this: Everyone working with biobanks, especially those interested in the interaction between biobank and patients and childs role in biobanking.

 

 

Biobanking article of the week (12/2017)

Article: Biospecimen User Fees: Global Feedback on a Calculator Tool

Lise A. M. Matzke, Sindy Babinsky, Alex Slotty et al.

BIOPRESERVATION AND BIOBANKING, Volume 15, Number 1, 2017.

DOI:10.1089/bio:2016.0027

 

Why I read it: To get an overview what to expect from a cost calculator and what to consider when deploying one.

 

Short summary: The article summarizes the feedback for the cost calculator tool and concludes that the use of user fee calculator reduces variation in the fees.

 

Who should read this: Everyone working with biobanks, especially those interested in biobank management and financial issues.

 

 

Biobanking article of the week (11/2017)

Article: Business Planning in Biobanking: How to Implement a tool for Sustainability

Mirella Ciaburri, Mariarosaria Napolitano, and Elena Bravo.

BIOPRESERVATION AND BIOBANKING, Volume 15, Number 1, 2017.

DOI:10.1089/bio:2016.0045

 

Why I read it: To get ideas on how to implement a business plan in biobanking.

 

Short summary: The article proposes models for the of business plan preparations.

 

Who should read this: Everyone working with biobanks, especially those interested in biobank management and sustainability issues.

 

 

Biobanking article of the week (10/2017)

Article:  Methods to Improve Sustainability of a Large Academic Biorepository

Susan M. Kelly, Luke T. Wiehagen, Philip E. Schumacher, and Rajiv Dhir

BIOPRESERVATION AND BIOBANKING, Volume 15, Number 1, 2017.

DOI:10.1089/bio:2016.0076

 

Why I read it: To get ideas on how to improve sustainability from academic institutions point of view.

 

Short summary: The article discusses how the University of Pittsburgh Health Sciences Tissue Bank has managed to sustain its value.

 

Who should read this: Everyone working with biobanks, especially those interested in biobank management and sustainability issues.

 

 

 

Biobanking article of the week (8/2017)

Article: The Canadian Tissue Repository Networok Biobank Certification and the College of American Pathologists Biorepository Accreditation Programs: Two Strategies for Knowledge Dissemination in Biobanking

Rebecca o. Barnes, Katheryn E. Shea, and Peter H. Watson.

BIOPRESERVATION AND BIOBANKING, Volume 15, Number 1, 2017.

DOI:10.1089/bio:2016.0021

 

Why I read it: To learn about two internationally available quality assurance systems by CTRNet and CAP.

  

Short summary: The article describes in detail tow programs: CTRNet BiobankCertification Program and the CAP Biobankin Accreditation Program, which complement each other to address quality across the spectrum of research biobanking.

 

Who should read this: Everyone working with biobanks, especially those interested in quality issues.

 

 

Biobanking article of the week (7/2017)

Article: Progressive Consent and Specimen Accrual Models to Address Sustainability: A Decade’s Experience at an Oregon Biorepository

John A. Ost, Paul W. Newton, Duncan R. Neilson, Joseph A. Cioffi, P. Ashley Wackym, and R. Serene Perkins

BIOPRESERVATION AND BIOBANKING, Volume 15, Number 1, 2017.

DOI:10.1089/bio:2016.0114

 

Why I read it: To find out about actual experiences with one consent model.

  

Short summary: The article presents a type of front-door consent to improve the collection phase.

 

Who should read this: Everyone working with biobanks, especially those interested in sample collection or issues related to consent.

 

 

Biobanking article of the week (5/2017)

Article: We must urgently clarify data-sharing rules

Jan-Eric Litton

Nature 541, 437 (26 January 2017) doi:10.1038/541437a

 

Why I read it: Because the legal framework of data-sharing is very current topic in European union.

  

Short summary: The BBMRI ERIC director general, Jan-Eric Litton, shares his views on the changing legal framework of data-sharing.

 

Who should read this: Everyone working with biobanks, especially those interested in ethical, legal and social issues.

 

 

Biobanking article of the week (4/2017)

Article: Biobank sustainability: current status and future prospects

Marika Doucet, Martin Yuille, Luke Georghiou, Georges Dagher

Journal of Biorepository Science for Applied Medicine, 2017:5 1-7;

 

Why I read it: Because biobanks need long-term support to fulfill their role as infrastructures and their funding must be found and secured.

  

Short summary: The paper presents a study that suggests strategies to improve long-term sustainability for biobanks.

 

Who should read this: Everyone working with biobanks, especially those interested in financial issues.

 

 

Biobanking article of the week (2/2017)

Article: Assessing Researcher Needs for a Virtual Biobank

Jenna van Draanen, et al.

Biopreservation and Biobanking, Volume 00, Number 00, 2016; doi:10.1089/bio.2016.0009                  

 

Why I read it: To learn about the stakeholders views about the requirements of biorepositories.

  

Short summary: The paper presents a questionnaire study to find out the researchers needs on the biobanking field.

 

Who should read this: Everyone working with biobanks.

 

 

Biobanking article of the week (1/2017)

Article: Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study

Holger Langhof, Hannes Kahrass, Sören Sievers and Daniel Strech

European Journal of Human Genetics, advance online publication, 21 December 2016; doi:10.1038/ejhg.2016.172

 

Why I read it: To find out about access policies in biobanks, since access issues are one of the main discussion points nowadays.

  

Short summary: The paper presents a cross sectional study of publicly available access policies.

 

Who should read this: Everyone working with biobanks, especially those interested in access issues.

 

 

Biobanking article of the week (51/2016)

Article: BBMRI-ERIC Directory: 515 Biobanks with Over 60 Million Biological Samples

Holub, et al.

Biopreservation and Biobanking, Volume 14, Number 6, 2016

doi:10.1089/bio.2016.0088

 

Why I read it: To get a short update about the BBMRI-ERIC Directory

  

Short summary: The paper presents BBMRI-ERIC Directory.

 

Who should read this: Everyone working with biobanks.

 

 

Biobanking article of the week (50/2016)

Article: What Potential Donors​ in Research Biobanking Want to Know: A Large  Population Study of the Italian Twin Registry

Toccaceli, et al.

Biopreservation and Biobanking, Volume 14, Number 6, 2016

doi:10.1089/bio.2016.0012

 

Why I read it: To get an insight of potential healthy donors’ wishes.

  

Short summary: The article reports the results of a cross-sectional survey for healthy donors in research biobanking.

 

Who should read this: Everyone working with biobanks, especially those interested in ELSI and donors’ concerns.

 

 

Biobanking article of the week (46/2016)

Article: The alliance between genetic biobanks and patient organisations: the experience of the telethon network of genetic biobanks

Chiara Baldo, et al.

Orphanet Journal of Rare Diseases (2016) 11:142; doi:10.1186/s13023-016-0527-7

 

Why I read it: To learn about deepening the collaboration between biobanks and patient organisations, which has huge untapped potential.

  

Short summary: The article reports the collaboration between biobanks and patient organisations in the Telethon Network of Genetic Biobanks (TNGB).

 

Who should read this: Everyone working with biobanks, especially those interested in networking, collaboration and the engagement of patient organisations.

 

 

Biobanking article of the week (45/2016)

Article: A Biobank for Long-Term and Sustainable Research in the Field of Congenital Heart Disease in Germany

Thomas Pickardt, Eva Niggemeyer, Ulrike M.M. Bauer, Hashim Abdul-Khaliq, Competence Network for Congenital Heart Defects Investigators

Genomics Proteomics Bioinformatics14 (2016) 181-190; doi:10.1016/j.gpb2016.03.003

 

Why I read it: To learn about a practical example of a disease specific biobank.

  

Short summary: The article presents the basic information about the CHD-Biobank in Germany.

 

Who should read this: Everyone working with biobanks.

 

 

Biobanking article of the week (44/2016)

Article: Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research

Natalie T. Boutin, et al.

Journal of Personalized Medicine, 2016, 6, 17; doi:10.3390/jpm69020017

 

Why I read it: To get an idea of how the electronic consent works in reality.

  

Short summary: The article presents a study done to characterize the potential benefits and challenges of electronic informed consent.

 

Who should read this: Everyone working with biobanks, especially those interested in patient recruitment and engagement.

 

 

Biobanking article of the week (43/2016)

Article: Biobank attributes associated with higher patient participation: a randomized study

Angèle Gayet-Ageron, Sandrine Rudaz and Thomas Perneger

European Journal of Human Genetics advance online publication, 5 October 2016; doi10.1038/ejhg.2016.132

 

Why I read it: To get ideas on how to affect patient participation.

  

Short summary:   The article presents a study done to assess patients’ intent to participate in a hospital-based biobank and to explore the factors associated with higher participation in Switzerland.

 

Who should read this:  Everyone working with biobanks, especially those interested in improving the patient participation.

 

 

Biobanking article of the week (42/2016)

Article: Asian Network of Research Resource Centeres

Sunhee Lee, Seungjoo Nam, Paul E. Jung, Ki-Jeong Kim, and Yeonhee Lee

Biopreservation and Biobanking Volume 14, Number 5, 2016, Mary Ann Liebert, Inc. DOI: 10.1089/bio.2016.008

 

Why I read it: To get an idea of what’s going on in Asia at the bioresource network level.

  

Short summary:   The article describes the history, roles and current activities of the Asian Network of Research Resource Centers (ANRRC).

 

Who should read this:  Everyone working with biobanks, especially those interested in networking and governance issues.

 

 

Biobanking article of the week (33/2016)

Article: Repository Planning, Design, and Engineering: Part II—Equipment and Costing

Phillip M. Baird and Elaine W. Gunter

Biopreservation and Biobanking Volume 14, Number 4, 2016, Mary Ann Liebert, Inc. DOI: 10.1089/bio.2015.0085

 

Why I read it: Because I want a clear overall view of what to consider when creating a new biobank.

  

Short summary:   The second part of a review describing the planning, engineering, and design considerations for building a new repository.

 

Who should read this:  Everyone working with biobanks, especially those interested in creating or improving the design of a biobank.

 

 

Biobanking article of the week (32/2016)

Article: Realizing Our Potential in Biobanking: Disease Advocacy Organizations Enliven Translational Research

Kelly A. Edwards, Sharon F. Terry, Dana Gold, Elizabeth J. Horn, Mary Schwartz, Molly Stuart, and Suzanne D. Vernon

Biopreservation and Biobanking Volume 14, Number 4, 2016, Mary Ann Liebert, Inc. DOI: 10.1089/bio.2015.0053

 

Why I read it: Because a shift to a participant-centric direction could make biobank activities more approachable to the potential participants and increase the translational impact of the collections.

 

Favorite quote: Academics, advocacy-based researchers, and industry employees can reconnect with their commitments and passions to make an impact and help people. We all want to make difference. However, not sharing, cooperating and collaborating, will mean not progressing at rates that will actually help people. As one of our members stated: ‘Secrecy is a public health problem.’ Academic research will benefit from joining in this effort to keep people and health benefit goals at the center of research.

 

Short summary:  The article presents overarching approaches from successful disease advocacy organization biobanks.

 

Who should read this: Everyone working with biobanks, especially those interested in intersectoral collaboration.

 

 

Biobanking article of the week (30/2016)

Article: What Does Anonymization Mean? DataSHIELD and the Need for Consensus on Anonymization Terminology

Susan E. Wallace

Biopreservation and Biobanking, Volume 14, Number 3, 2016. Mary Ann Liebert, Inc. DOI: 10.1089/bio.2015.0119

 

Why I read it: Because we need a common clearly defined terminology to ensure understanding between parties. This would improve ever more the data protection and access process.

  

Short summary: The article argues that transnational and international collaboration in biomedical research requires more exact terminology to avoid unnecessary confusion and uncertainty.

 

Who should read this: Everyone working with biobanks, especially those interested in data protection issues.

 

 

Biobanking article of the week (26/2016)

Article: Access Governance for Biobanks: The Case ofthe BioSHaRE-EU Cohorts

Jane Kaye, Linda Briceño Moraia, Colin Mitchell, Jessica Bell, Jasper  Adriaan Bovenberg, Abbe-.Marie Tassé, and Bartha Maria Knoppers.

Biopreservation and Biobanking, Volume 14, Number 3, 2016. Mary Ann Liebert, Inc. DOI: 10.1089/bio.2015.0124

 

Why I read it: Because proper access governance is crucial for the utilization of biobanks for research.

 

Favorite Quote:Accessing biobanks based in different jurisdictions maximizes the level of samples and data available for research with potential benefits for public health and also individual clinical care. Aspects of access raise ethical and legal questions as well as practical challenges.” 

 

Short summary: The article analyzes the access governance arrangements of the five original biobank members of BioSHaRE-EU project to identify similarities and differences in policy and procedure, and makes recommendations for increased harmonization of internal governance among European biobanks.

 

Who should read this: Everyone working with biobanks, especially those interested in access governance.

 

 

Biobanking article of the week (24/2016)

Article: Managing incidental findings and research results in genomic resrach involving biobanks and archived data sets

Susan M. Wolf, Brittney N. Crock, Brian Van Ness, Frances Lawrenz, & al.

Genetics in Medicine, Volume 14, Number 4, 2012, p. 361-384. Mary Ann Liebert, Inc. DOI: 10.1089/bio.2016.0002

 

Why I read it: Because research participants are crucial stakeholders for biobank research and researchers need clarification to the criteria for recontacting them.

 

Short summary: The article reports recommendations from a 2-year NIH project on how to react to incidental findings and how to share individual research results.

 

Who should read this: Everyone working with biobanks, especially those interested in ethical issues.

 

 

Biobanking article of the week (23/2016)

Article: International Data Sharing in Practice: New Technologies Meet Old Governance

Madeleine J. Murtaugh, Andrew Turner, Joel T. Minion, Michaela Fay, and Paul B. Burton

Biopreservation and Biobanking Volume 14, Number 3, 2016, Mary Ann Liebert, Inc. DOI: 10.1089/bio.2016.0002

 

Why I read it: Because we are having a turning point in our hands with our infrastructures and we need to recognize how our governing systems need to evolve to get the most out of the new era.

 

Short summary: The article presents an ethnographic study that shows how the potential of a study approach was lost under contemporary data access governance. The writers conclude a few requirements for large consortia.

 

Who should read this: Everyone working with biobanks, especially those interested in access and governance issues.

 

 

Biobanking article of the week (22/2016)

Article: Toward Global Biobank Integration by Implementation of the Minimum Information About Biobank Data Sharing (MIABIS 2.0 Core)

Roxana Merino-Martinez, Loreana Norlin, David van Enckevort, Gabriele Anton, Simone Schuffenhauer, Kaisa Silander, Linda Mook, Petr Holub, Raffael Bild, Morris Swertz, and Jan-Eric Litton

Biopreservation and Biobanking Volume 00, Number 00, 2016, Mary Ann Liebert, Inc. DOI: 10.1089/bio.2015.0070

 

Why I read it: Because overall interoperability, standardization and  harmonization are crucial for biobank networks.

 

Short summary: The article presents the integration standard, MIABIS 2.0. Core.

 

Who should read this: Everyone working with biobanks, especially those interested in interoperability through harmonization and standardization.

 

 

Biobanking article of the week (21/2016)

Article:  Fundamental Considerations for Biobank Legacy Planning

Lise Anne Marie Matzke, Benjamin Fombonne, Peter Hamilton Watson, and Helen Marie Moore

Biopreservation and Biobanking Volume 14, Number 2, 2016, Mary Ann Liebert, Inc. DOI: 10.1089/bio.2015.0073

 

Why I read it: Because it’s good to consider the whole life cycle of biobanks, when working with them.

 

Short summary: The article describes some of the fundamental considerations for preparing and executing a legacy plan for biobanks.

 

Who should read this: Everyone working with biobanks, especially those interested in biobank management.

 

 

Biobanking article of the week (18/2016)

Article: Effects of Transport and Storage Conditions on Gene Expression in Blood Samples

Francesca Malentacchi, Sara Pizzamiglio, Ralf Wyrich, Paolo Verderio, Chiara Ciniselli, Mario Pazzagli, and Stefania Gelmini

Biopreservation and Biobanking Volume 14, Number 2, 2016, Mary Ann Liebert, Inc. DOI: 10.1089/bio.2015.0037

 

Why I read it: Because sample transport and handling is a critical step, when we want to actually use the samples for research.

 

Short summary: The article reports the results of a pilot study aimed to investigate the role of transport and storage of blood samples with and without RNA stabilizer.

 

Who should read this: Everyone working with biobanks, especially those interested in hands-on biobanking and quality issues.

 

 

Biobanking article of the week (17/2016)

Article: Repository Planning, Design, and Engineering: Part I--Infrastructure

Philip M. Baird and Eline W. Gunter

Biopreservation and Biobanking Volume 14, Number 2, 2016, Mary Ann Liebert, Inc. DOI: 10.1089/bio.2015.0084

 

Why I read it: Because I wanted a clear overall view of what to consider when creating a new biobank.

Short summary: The first part of a two-part review describing the planning, engineering, and design considerations for building a new repository.

 

Who should read this: Everyone working with biobanks, especially those interested in creating or improving the design of a biobank.

 

 

Biobanking article of the week (16/2016)

Article: Biorepository for Pediatric Cancer with Minimal Resources: Meeting the Challenges

Rania M. Labib, Mahmoud M. Mostafa, Ahmad S. Alfaar, Doaa Yehia, Maram Alaa, Mariam G. Elzayat, Mohamed Adel, Sameera Ezzat, and Sherif Abo El-Naga

Biopreservation and Biobanking Volume 14, Number 1, 2016, Mary Ann Liebert, Inc. DOI: 10.1089/bio.2015.0004

 

Why I read it: Because we don’t have enough hands-on step-by-step success stories on how to create a biorepository with scarce resources.

 

Short summary: A success story about building a quality biorepository with minimal resources.

 

Who should read this: Everyone working with biobanks, especially those interested in the early steps of a biobank and prospective biobankers.

 

 

Biobanking article of the week (15/2016)

Article: Trends in Biobanking: A Bibliometric Overview

Jonas J. Astrin and Fay Betsou

Biopreservation and Biobanking Volume 14, Number 1, 2016, Mary Ann Liebert, Inc. DOI: 10.1089/bio.2015.0019

 

Why I read it: Because I wanted to know how the discussion around biobanking has developed over the years. That way one is able to get a bigger picture of the discourse.

 

Short summary: A bibliometric overview of how, where and why is biobanking mentioned in the published articles.

 

Who should read this: Everyone working with biobanks, especially those interested in the overall discussion around biobanks.

 

 

Biobanking article of the week (10/2016)

Article: Ensuring Biobank Value Through Effective Utilization

Edited by: Marianna J. Bledsoe and Marianne K. Henderson

Authors: Sherilyn J Sawyer, Jeffrey M. Otto, and K. Stephen Suh

Biopreservation and biobanking Volume 13, Number 6, 2015, Mary Ann Liebert, Inc. DOI: 10.1089/bio.2015.29043

 

Why I read it: Because proper utilization of biobanks is vital for the justification of their support and a key element for the advancement of science.

 

Short summary: Main points of the thoughts and experiences of “Leaders in Biobanking Congress” panel session on how  to best ensure the effective utilization of specimens in their biobanks.

 

Who should read this: Everyone working with biobanks, especially those interested in the biobank management and development issues.

 

 

Biobanking article of the week (1/2016)

Article: Biobanks, Data Sharing, and the Drive for a Global Privacy Governance Framework

Edward S. Dove. The Journal of Law, Medicine and Ethics. Volume 43, Issue 4, Article first published online: 29 DEC 2015; DOI: 10.1111/jlme.12311 

 

Why I read it: To get a deeper insight for the legal issues in international data sharing.

 

Favorite quote: “Harmonization, which can be defined as a process in which points of legislative, regulatory, or policy convergence are identified and differencers made compatible so as to make various national legislation regulation and policiies substantially equivalent to one another, is a strong and strongly desired remedy for these gaps and marked differences of approach.”
 

Short summary: The article gives an overview of the need for a global regulative framework for the biobanks in privacy issues.
 

Who should read this: Everyone interested privacy issues, global collaboration and data sharing.

 

 

Biobanking article of the week (50/2015)

Article: Harmonising and linking biomedical and clinical data across disparate data archives to enable integrative cross-biobank research

Ola Spjuth, Maria Krestyaninova et al. European Journal of Human Genetics advance online publication, 26 August 2015; doi:10.1038/ejhg.2015.165

 

Why I read it: Because privacy issues and heterogeneity of information systems are relevant issues for every biobank collaboration.

 

Favorite quote: “Through this formalism, the SAIL method empowers consortia, collaborative initiatives and individual biobanks to interlink existing and future data across various biomedical research and healthcare digital collections. The features of SAIL thereby greatly enhance the efficiency of translational and multi-disciplinary research efforts.”
 

Short summary: The consortia were able to sidestep many research obstacles related to privacy issues using the SAIL method for data linking.
 

Who should read this: Everyone interested in cross-biobank research.

 

 

Biobanking article of the week (48/2015)

Article: Stakeholders’ perspectives on biobank-bsed genomic research: systematic review of the literature

Alma Husedzinovic, Dominik Ose, Christoph Schickhardt, Stefan Fröhling and Eva C Winkler. European Journal of Human Genetics (2015) 23, 1607–1614. doi:10.1038/ejhg.2015.27

 

Why I read it: To get an overview of the stakeholders’ perspectives on biobank-based genomic research.

 

Favorite quote: “We identified the following policy implications from our research: presenting a broad consent model would prevent only a small proportion of patients to donate their sample to biobank-based genomic research. If centers want to convince all potential donors (patients or public) to participate, they might want to consider ways to annotate the sample with the research area the donor gave his or her content and use the sample accordingly.”
 

Short summary: The review represents a literature review of the articles on stakeholders’ perspectives on biobank-basesd genomic research.
 

Who should read this: Everyone working with biobanks.

 

 

Biobanking article of the week (45/2015)

Article: Health professionals’ opinions on supporting a cancer biobank: identification of barriers to combat biobanking pitfalls

 Nicole J Caxeiro et al. European Journal of Human Genetics advance online publication, 2 September 2015; doi:10.1038/ejhg.2015.191

 

Why I read it: Because the health professionals are a crucial part of the creation and running of a biobank and the barriers they see might differ from the ones researchers/biobankers already acknowledge.

 

Favorite quote: “The findings of this study further demonstrated that health professionals familiar with what is involved in biobanking were willing to participate in its daily activities from consent to biospecimen collection. Moreover, despite some participants’ uncertainty on the impact biobanking could have on routine workloads, there remained a strong favourable response to the other aspects of biobanking.”
 

Short summary: The article presents a study to determine the attitudes of health professionals towards cancer biobanking.
 

Who should read this: Everyone working with biobanks.

 

 

 

Biobanking article of the week (43/2015)

Article: Novel insights into the genetics of smoking behaviour, lung function, and chronic obstructive pulmonary disease (UK BiLEVE): a genetic association study in UK Biobank

Louise V Wain, Nick Shrine, et al. Lancet Respir Med  Volume: 3, Issue: 10, Date: 2015 Oct , Pages: 769-81

 

Why I read it: Because we need more examples of how biobanks can be used in research to underline their importance for the public.
 

Favorite quote: When genotyping of all UK Biobank participants is complete, UK Biobank will provide a unique resource for genome-wide studies of quantitative traits, nested casecontrol studies, and studies in which longitudinal outcomes can be studied.”
 

Short summary: The article presents a study that highlights the importance of biobanks as contributors to research publications.
 

Who should read this: Everyone working with biobanks.

 

 

Biobanking article of the week (40/2015)

Article: The Importance of Biobanking in Cancer Research

Tania Castillo-Pelayo, Sindy Babinszky, Jodi LeBlanc and Peter H Watson

Biopreservation and Biobanking, Volume 13, Number 3, 2015 Mary Ann Liebert, Inc. DOI: 10.1089/bio.2014.0061

 

Why I read it: Because we need more success stories of biobanks to underline their importance in research for the public.
 

Favorite quote: “Clearly if human biospecimens are as commonly used and important to the generation for data in cancer research as animals and cell lines, then Biobanking should be governed to facilitate improved access, utilization, standardization, and quality and biorepositories should become an accepted part of the health research infrastructure.”
 

Short summary: The article presents a study that highlights the importance of biobanks as contributors to research publications.
 

Who should read this: Everyone working with biobanks.

 

 

Biobanking article of the week (37/2015)

Article: Sharing and Reuse of Sensitive Data and Samples: Supporting Researchers in Identifying Ethical and Legal Requirements

Murat Sariyar, Irene Schluender, Carol Smee and Stephanie Suhr. Biopreservation and Biobanking, Volume 13, Number 4, 2015 Mary Ann Liebert, Inc. DOI: 10.1089/bio.2015.0014

 

Why I read it: Because data sharing is necessary in order to have sufficient numbers of patients for increasing the power of data analysis in research.

 

Favorite quote: Here, it is important to provide high-level guidance to researchers that enables informed decisions to be made, such as when there is a need to consult a legal expert or whether it might be more suitable to anonymize data before making it available, rather than providing pseudonymous data. Of course, a tool might also inform users about suitable algorithms and technical tools that facilitate data anonymization. In general, the suitability and scope of any tool must be assessed and monitored using specific use cases.”

 

Short summary: The article describes the regulatory context discusses some relevant online tools to assist researchers working with sensitive data and samples.

 

Who should read this: Every researcher sharing or reusing sensitive data and samples.

 

 

Biobanking article of the week (36/2015)

Article: Scientists’ perspectives on consent in the context of biobanking research

Zubin Master, Lisa Campo-Engelstein and Timothy Caulfield. European Journal of Human Genetics. (2015) 23, 569-574. 2015 Macmillan Publishers Limited, 1018-4813/15

 

Why I read it: Because we need to capture also the scientists’ perspective on consent, not only the patients’.

 

Favorite quote: “As biobanks continue to flourish, the ethical and legal appropriateness of different informed consent models needs to be determined. While the scientific community cannot, of course, dictate consent policy, scientists have an important role in the consent process and provide a valuable and necessary perspective that should help to inform consent policy.”

 

Short summary: An article about an interview study with scientists on research ethics issues related to informed consent for Biobanking. The interviewees reported their preference for a general consent model, but many reported several concerns including donors needing some form of assurance that nothing unethical will be done with their samples and data.

 

Who should read this: Everyone working with biobanks, especially those interested in ethical issues.

 

 

Biobanking article of the week (35/2015)

Article: Optimizing sharing of hospital biobank samples

Peter H. J. Riegman, Bas de Jong, et al. Science Translational Medicine  22 Jul 2015:
Vol. 7, Issue 297, pp. 297fs31. DOI: 10.1126/scitranslmed.3009279

 

Why I read it: Because sample sharing is crucial for stimulating new research opportunities and provide added value for collections.

 

Short summary: Points to consider and ideas for optimizing the sharing of hospital biobank samples.

 

Who should read this: Everyone working with biobanks or other sample collections.

 

 

Biobanking article of the week (34/2015)

Article: Consent procedures in pediatric biobanks

Noor AA Giesbertz, Annelien L Bredenoord and Johannes JM van Delden. European Journal of Human Genetics (2015) 23, 1129–1134, 2015 Macmillan Publishers, doi:10.1038/ejhg.2014.267

 

Why I read it: To get a perspective on how children’s role in consent procedures is viewed.

 

Favorite quote: “Presently, little is known on the children’s in consent in pediatric Biobanking practice, only that children’s opinions are indeed frequently (planned to be) sought, and that there is a considerable variability in consent forms and the forms can be confusing.”

 

Short summary: The results of an international multiple-case study on the children’s role in consent procedures in pediatric biobanks.

 

Who should read this: Everyone interested in consent issues or ethical questions.

 

 

Biobanking article of the week (32/2015)

Article: Specific Legislation on Biobanks in Spain

Garcia-Merino et al. BIOPRESERVATION AND BIOBANKING, Volume 13, Number 3, 2015 Mary Ann Liebert, Inc., DOI: 10.1089/bio.2014.0070

 

Why I read it: To get an overview of the new legislation concerning biobanks in Spain.

 

Favorite quote: “Nevertheless, in the present globalization movement in research, biobanks will need a new legal framework that will lay down the norms on the exchange of biological samples among biobanks in different parts of the world, and that will set up a series of principles on uniform criteria that will minimize any discrepancy in decision-making by governance committees.”

 

Short summary: The new Spanish legislation concerning biobanks fulfills its objectives but has also some downsides. 

 

Who should read this: Everyone interested of the legislative side of biobanking.

 

 

Biobanking article of the week (25/2015)

Article: Quality Management of Biorepositories

Grizzle et al. BIOPRESERVATION AND BIOBANKING, Volume 13, Number 3, 2015 Mary Ann Liebert, Inc., DOI: 10.1089/bio.2014.0105

 

Why I read it: Because a strong quality management system is necessary to provide high quality  samples and data.

 

Favorite quote: “The leadership of a biorepository should realize that they play critical roles in research infrastructure and that this may involve education of investigators in the use, limitations, and potential bias of human tissues.”

 

Short summary: The article describes the basis of a quality management system program designed to aid biorepositories that want to improve their operations. 

 

Who should read this: All biobankers, especially those working with quality issues.

 

 

Biobanking article of the week (20/2015)

Article: Storage of Human Biospecimens: Selection of the Optimal Storage Temperature

Hubel et al. BIOPRESERVATION AND BIOBANKING, Volume 12, Number 3, 2014 Mary Ann Liebert, Inc., DOI: 10.1089/bio.2013.0084

 

Why I read it: To get an overview of the scientific basis for selecting a storage temperature based on current scientific understanding.

 

Favorite quote: “Optimal storage temperatures for biological cells are a function of solution composition and biospecimen type. Implementation of proper quality control systems for monitoring stability of biomarkers in long-term storage will permit determination of suboptimal storage conditions and continuous improvement of biospecimen quality.”

 

Short summary: Description of the scientific basis for selecting a storage temperature for a biospecimen based on current scientific understanding. 

 

Who should read this: All biobankers, especially those working with quality issues.

 

 

Biobanking article of the week (19/2015)

Article: The Process of Moving from a Regionally Based Cervical Cytology Biobank to a National Infrastructure

 

Why I read it: Because the process of combining infrastructures can be complex and it’s good to know beforehand what to expect in a situation like that.

 

Favorite quote: “The driving force of the nationalization of the biobank is to provide multi-center research with the biobank’s high quality samples, and to utilize their related national clinical records to enhance the efficiency of the healthcare system for the care of patients and the support of researchers.”

 

Short summary: A report of the implementation of standardisation processes when combining infrastructures.

 

Who should read this: All biobankers, especially those interested in the quality and standardisation issues.

 

 

Biobanking article of the week (13/2015)

Article: Open consent, Biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation?

Hallinan et Friedewald. Life Sciences, Society and Policy (2015) 11:1, DOI 10.1186/s40504-014-0020-9

 

Why I read it: Because data protection issues are very topical both globally and especially in the European Union.

 

Favorite quote: “…there seems no way open consent can meet the requirement under the regulation for consent to be ‘specific and informed’. However, there are strong arguments suggesting that the regulation’s conditions are poorly suited to the biobanking context and to the processing of genetic data. In this regard, the authors feel there should be a political discussion about whether to provide a specific set of consent conditions for biobanking.”

 

Short summary: An analysis of the new EU data protection proposal in relation to biobanking.

 

Who should read this: All biobankers, especially those interested in the data protection discussion.

 

 

Biobanking article of the week (11/2015)

Article: The Swedish Twin Registry: Establishment of a Biobank and Other Recent Development

Magnusson et al. Twin Research and Human Genetics / Volume 16 / Special Issue 01 / February 2013, pp 317-329. DOI: http://dx.doi.org/10.1017/thg.2012.104

 

Why I read it: To get an overview of the Swedish twin registry and how they’ve been developing their activities during the past years.

 

Favorite quote: The main contributions [of STR] have been through quantitative modelling of trait variances and the use of co-twin control designs, requiring collections of phenotypic and exposure data in large quantities and of high quality, which is still ongoing in several projects on twins of various ages. However, the major development of the STR during the past 10 years has been the collection of biological samples and the creation of a biobank, at present covering a total of 45,000 twins.”

 

Short summary: Description of the main projects within which the new collections of biological samples and phenotypic measures have been collected in the Swedish twin registry.

 

Who should read this: Everyone working with twin studies or biobanks.

 

 

Biobanking article of the week (10/2015)

Article: Standard Preanalytical Coding for Biospecimens: Review and Implementation of the Sample PREanalytical Code (SPREC)

Lehmann et al. Biopreservation and Biobanking, Volume 10, Number 4, 2012. DOI: 10.1089/bio.2012.0012

 

Why I read it: To get an insight to the recent standards of preanalytical sample coding.

 

Favorite quote: “The objective of the SPREC is to facilitate annotation of biospecimens with preanalytical factors that fulfil two criteria: (a) their variation is known nor highly suspected to impact the result sof downstream analyses, and (b) they are within the control of the biobank and thus can be anticipated and standardized in standard operating procedures (SOPs).”

 

Short summary: Presentation of an updated version of the sample preanalytical code, SPREC 2.0.

 

Who should read this: All researchers, especially those working with samples and quality management in the preanalytical phase.

 

 

Biobanking article of the week (9/2015)

Article: Developing a guideline to standardize the citation of bioresources in journal articles (CoBRA)

Bravo et al. BMC Medicine (2015) 13:33 DOI 10.1186/s12916-015-0266-y

 

Why I read it: Because we need a framework for the accurate acknowledgement of the use of bioresources in scientific publications, in order to measure the impact of such resources and to encourage policies of collaboration and sharing.

 

Favorite quote: “The use of CoBRA will improve the quality of bioresource reporting and will allow bioresource traceability in scientific publications, encouraging policies of collaboration and sharing. The endorsement and the adoption of the CoBRA guideline by authors, editors, researchers, and bioresource policy stakeholders is the first necessary step to achieve these goals and is essential to enhance transparency in health research.”

 

Short summary: Introduction to the guideline for the standardised citation of bioresources in journal articles (CoBRA).

 

Who should read this: All researchers in the biomedical field.

 

 

Biobanking article of the week (8/2015)

Article: International Charter of principles for sharing bio-specimens and data

Mascalzoni et al. European Journal of Human Genetics (2014), European Journal of Human Genetics, 24 September 2014; doi:10.1038/ejhg.2014.197

 

Why I read it: Because there is a growing need to provide improved international access to research data and sample collections to enhance health discovery and validation. 

 

Favorite quote: “The Charter has been developed to provide a common overview and foundational framework of the practice of sharing, and to frame a minimum list of the terms needed to achieve an equitable and ethically grounded data sharing agreement through multi-stakeholder engagement and consensus, including patient representatives, clinicians, researchers, institutions and government agencies.”

 

Short summary: Introduction of an international charter of principles and some tools for sharing data and samples.

 

Who should read this: All biobankers, especially those involved with access improvement.

 

 

Biobanking article of the week (7/2015)

Article: Public’s attitudes on participation in a biobank for research: an Italian survey

Porteri et al. BMC Medical Ethics 2014, 15:81. doi:10.1186/1472-6939-15-81

 

Why I read it: To get an insight of the public attitude towards biobanking in Italy.

 

Favorite quote: “Family members showed willingness to participate in a biobank for research and expressed a view on the ethical aspects of a biobank management that differ on several issues from the Italian EC’s opinion.”

 

Short summary: An Italian survey conducted among family members of patients about their willingness to participate in a biobank and their views about the ethical and legal aspects of biobank management.

 

Who should read this: All biobankers, especially those working in biobank management.

 

 

Biobanking article of the week (6/2015)

Article: 2012 Best Practices for Repositories: Collection, Storage, Retrieval, and Distribution of Biological Materials for Research

ISBER, Biopreservation and Biobanking, Volume 10, Number 2, 2012, Mary Ann Liebert, Inc., DOI: 10.1089/bio.2012.1022

 

Why I read it: To get acquainted with the 2012 ISBER’s best practices for repositories.

 

Short summary: ISBER’s 2012 Best Practices for Repositories

 

Who should read this: Biobankers in general, especially those interested in quality control.

 

 

Biobanking article of the week (5/2015)

Article: The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases

M. Mora, et al. 2014 European Journal of Human Genetics, 1–8

 

Why I read it: To learn about EuroBioBank and their hands-on experiences in transnational biobanking.

 

Favorite quote: “The member biobank maintains the legal custodianship of samples, whereas the EBB acts as a clearing house or ‘virtual’ biobank with its online catalogue and search engine for locating samples.”

 

Short summary: It is a description of the EBB network, its emergence, achievements and the major challenges now and in the future.

 

Who should read this: Biobankers in general and researchers conducting research on rare diseases.

 

 

Biobanking article of the week (3/2015)

Article: Analysis of the Research Sample Collections of Uppsala Biobank

M. Engelmark & A. Beskow

 

Why I read it: To explore the research sample collections in Uppsala Biobank.

 

Favourite quote: “Today, biobanks represent one of the most important infrastructures and resources for developing and improving healthcare.”

 

Short summary: The overall description of the research sample collections in Uppsala Biobank is presented viewing e.g. number and types of samples, data storage systems, interest in collaboration with companies, research areas, publications and access of sample collections.

 

Who should read this: Biobankers and researchers in the look for existing biobank materials in Sweden.

 

 

Biobanking article of the week (2/2015)

Article: Nottingham Health Science Biobank: a sustainable bioresource

Matharoo-Ball B, Thomson BJ;  Biopreservation and Biobankingl, 2014.  doi: 10.1089/bio.2014.0056.

 

Why I read it: To view how financial and operational sustainability in a biobank can be achieved.

 

Favorite quote: “The most important form of sustainability is that of scientific purpose.”

 

Short summary: The development of a sustainable bioresource of Nottingham Health Science Biobank within 3 years of operation.

 

Who should read this: Biobankers interested in business and sustainability models in biobanks.

 

 

Biobanking article of the week (51/2014)

Article: Protein deep sequencing applied to biobank samples from patients with pancreatic cancer

Daniel Ansari, Roland Andersson, Monika P Bauden, Bodil Andersson, Joanne B Connolly, Charlotte Welinder, Agata Sasor, György Marko Varga; J Cancer Res Clin Oncol, 2014 Sep 13. DOI 10.1007/s00432-014-1817-x

 

Why I read it: To learn how biobanked samples benefit the research for early detection of pancreatic cancer.

 

Favorite quote: “Our study led to the identification of a 40-protein panel that distinguishes pancreatic cancer from benign and healthy controls.”

 

Short summary: Prospectively sampled serums from South Swedish Pancreas Biobank were used to identify possible cancer biomarkers for early detection of pancreatic cancer.

 

Who should read this: Anyone interested in biomarker discovery for pancreatic cancer.

 

 

Biobanking article of the week (50/2014)

Article: Getting a fair share: Attitudes and perceptions of biobank stakeholders concerning the fairness of sample sharing

Flora Colledge and Bernice Elger; Bioethics ISSN 0269-9702 (print); 1467-8519 (online)

 

Why I read it: To find out biobank stakeholders perceptions of fairness.

 

Favorite quote: “Issues such as transparency, rules, and responsibility to the public were brought up frequently, without prompting, and opposition to these attitudes arose in only a few cases”

 

Short summary: A study based on interviews focusing on biobank stakeholder’s perceptions of current and optimal fair sample sharing practices.

 

Who should read this: To learn about fair sharing.

 

 

Biobanking article of the week (46/2014)

Article: Critical Issues in International Biobanking

Moderator: Jim Vaught

Experts: Akin Abayomi,Tim Peakman, Peter Watson, Lise Matzke, and Helen Moore

Clinical Chemistry 60:11, 1368–1374 (2014)

 

Why I read it: To find out how experts view the critical issues that biobanks are facing today.

 

Favorite quote: “Having a quality management plan in place for biobanking does not mean that perfection is expected; in fact, it is important that quality management be reasonable in scope and that errors be expected.”

 

Short summary: This article focuses on critical issues of biobanking today: quality management, biobank network design, long-term sustainability, communicating the value of biobanking to different stakeholders, and the return of research results to biospecimen donors.

 

Who should read this: Researchers, biobankers and doctors working in a biomedical field.

 

O. Törnwall 13.11.2014, Helsinki

 

 

Biobanking article of the week (43/2014)

Article: The German National Cohort: aims, study designs and organization

Wolfgang Ahrens, Wolfgang Hoffmann, Karl.-Heinz Jöckel, Rudolf Kaaks, Barbara Gromer, Karin Halina Greiser, Jakob Linseisen, Bo¨rge Schmidt, Heinz-Erich Wichmann, Susanne Weg-Remers; Eur J Epidemiol (2014) 29:371–382; DOI 10.1007/s10654-014-9890-7

 

Why I read it: To gain a better understanding of the structure and goals of the German national cohort consortium as a whole.

 

Favorite quote: “One specific element of the GNC is the fact that virtually the whole German epidemiological community has collaborated in the design and preparation of the GNC, and many of them will be directly involved in the field work.”

 

Short summary: The article introduces the German national cohort (GNC) consortium.

 

Who should read this: Anyone interested in what’s going on in the biobanking field of Germany.

 

 

Biobanking article of the week (41/2014)

Article: Method Validation for Preparing Serum and Plasma Samples from Human Blood for Downstream Proteomic, Metabolomic, and Circulating Nucleic Acid-Based Applications

Wim Ammerlaan, Jean-Pierre Trezzi, Pierre Lescuyer, Conny Mathay, Karsten Hiller, and Fay Betsou; Biopreservation and Biobanking, Vol. 12, Number 4, 2014, p.269-280; DOI: 10.1089/bio.2014.0003

 

Why I read it: Because validation of processing methods play an important role in in the context of quality assurance, accreditation, and biomarker development.

 

Favorite quote: “The purpose of this series is not to only provide methodology references for biospecimen processing, but also to propose methodology for the development of validation plans in the area of biospecimen processing.”

 

Short summary: The article demonstrates methodology for biospecimen processing method validation.

 

Who should read this: Anyone interested in the quality assurance and biomarker development.  

 

 

Biobanking article of the week (38/2014)

Article: A Practical Tool for Modeling Biospecimen User Fees

Lise Matzke, Simon Dee, John Bartlett, Sambasivarao Damaraju, Kathryn Graham, Randal Johnston, Anne-Marie Mes Masson, Leigh Murphy, Lois Shepherd, Brent Schacter, and Peter H. Watson; Biopreservation and Biobanking, Vol. 12, Number 4, 2014, p.234-239; DOI:10.1089/bio.2014.0008

 

Why I read it: Because Biobanks need long-term stable funding for covering their costs.

 

Favorite quote: But cumulative costs of maintaining infrastructure over many years without direct results makes securing long-term stable funding a common problem in biobanking. Broadly accepted measures of biobank impact are clearly lacking but are essential to make the business case for long term funding.”

 

Short summary: The paper presents calculator tool (accessible online) for biospecimen user fees.

 

Who should read this: Anyone interested in the financing of biobanks. 

 

 

Biobanking article of the week (36/2014)

Article: The Shanghai Biobanking DNA Quality Control Program

Liangliang Ruan, Yutong Song, Jinii Fan, Hao Ying, and Rongxing Gan

 

Why I read it: Because proper quality control and management are core features for biobanks and cooperation between biobanks requires a level of common and shared standards.

 

Favorite quote: “According to the guidelines from College of American Pathologists and ISBER, there is a long list of check points during the collection, storage, retrieval, testing and distribution of different types of biospecimens, whose quality is assessed by data gathered from analysis by various techniques. However the validation requirements for these techniques remain unclear.”

 

Short summary: The article presents the results of using spectrophotometry in validation of DNA quantification.

 

Who should read this: Anyone interested in quality management issues of biobanks. 

 

 

Biobanking article of the week (32/2014)

Article: The Australian Breast Cancer Tissue Bank (ABCTB)

J.E. Carpenter, D. Marsh, M. Mariasegaram and C.L. Clarke; Open Journal of Bioresources (2014)

 

Why I read it: Exploring bioresources with high reuse potential.

 

Favorite quote: “Operating principles are based on best practice guidelines and encompass two significant strategic features: Integration of tissue banking into clinical practice; and the development and adoption of web-based data management solutions.”

 

Short summary: This article presents the 2006 established Australian Breast Cancer Tissue Bank, their sample collections, methods, quality and access criteria.

 

Who should read this: Researchers locating bioresources for basic and transnational research.

 

O. Törnwall 5.8.2014, Helsinki 

 

 

Biobanking article of the week (27/2014)

Article: Individual Investigator Profiles of Biospecimen Use in Cancer Research

Lauren Braun, Maia Lesperance, Anne-Marie Mes-Massons, Ming S. Tsao, and Peter H. Watson; Biopreservation and Biobanking, Vol 12, Number 3, 2014, p. 192-198; DOI: 10.1089/bio.2013.0092

 

Why I read it: Because the increase in specimen and data quantities used in research will necessitate the biobanks to plan more carefully the collection of samples and data in order to respond the needs of the stakeholders.

 

Favorite quote: “Increased orientation of biobanks towards a customer focus requires better data about the market served in order to formulate strategies and to match the projected future demand for both biospecimens and data.”
 

Short summary: The article reports the results of an analysis to determine patterns in the usage of biospecimen and data by three individual cancer research investigators.
 

Who should read this: Especially those interested of the collection development in biobanks. 

 

 

 

Biobanking article of the week (26/2014)

Article: A Data Standard for Sourcing Fit-for-Purpose Biological Samples in an Integrated Virtual Network of Biobanks

Philip R. Quinlan, Gita Mistry, Helen Bullbeck, and Anne Carter, on behalf of the Confederation of Cancer Biobanks (CCB) Working Group 3; Biopreservation and Biobanking, Vol. 12, Number 3, 2014, p.184-191; DOI: 10.1089/bio.2013.0089

 

Why I read it: Because standardisation issues are being tackled all around the biobanking world and functional ways of doing it are more than welcome.
 

Favorite quote: “As such… the CCB will be able to provide a national registry of samples in the UK, and so provide a one-stop portal for researchers to source the most suitable samples available for their research within a framework of accredited standards.”
 

Short summary: The article reports the results of a working group for the confederation of cancer biobanks, which looked to establish a data standard to enable biobanks to communicate about the samples they had.
 

Who should read this: Especially those interested in the issues of standardisation and harmonisation in the field of biobanking.

 

 

Biobanking article of the week (24/2014)

Article: Public Perceptions of Cohort Studies and Biobanks in Germany

Johannes Starkbaum, Herbert Gottweiss, Ursula Gottweiss, Christina Kleiser, Jakob Linseisen, Christina Meisinger, Panagiotis Kamtsiuris, Susanne Moebus, Karl-Heinz Jöckel, Sonja Börm, and H.-Erich Wichmann; Biopreservation and Biobanking, Vol. 12, Numer2, 2014, p.121-130; DOI: 10.1089/bio.2013.0071

 

Why I read it: Because the way the public sees cohort research and biobanking is crucial for acquiring the public trust for biobanks.
 

Favorite quote: “Knowing where societal sensitivities are democratizes science and provides the opportunity to regard the expressed demands...”
 

Short summary: The article presents the results of a focus group discussion study done in Germany set up to investigate the public attitudes towards cohort studies and biobanking during a time when the largest German cohort study has been initiated.
 

Who should read this: Especially those interested in the social issues in biobanking.

 

Biobanking article of the week (22/2014)

Article: Systematic comparison of phenome-wide association study of electronic medical record data and genome-wide association study data

Joshua C Denny1,2, Lisa Bastarache2, Marylyn D Ritchie3, Robert J Carroll2, Raquel Zink2, Jonathan D Mosley1, Julie R Field4, Jill M Pulley4,5, Andrea H Ramirez1, Erica Bowton4, Melissa A Basford4, David S Carrell6, Peggy L Peissig7, Abel N Kho8, Jennifer A Pacheco9, Luke V Rasmussen10, David R Crosslin11, Paul K Crane12, Jyotishman Pathak13, Suzette J Bielinski14, Sarah A Pendergrass3, Hua Xu15, Lucia A Hindorff16, Rongling Li16, Teri A Manolio16, Christopher G Chute13, Rex L Chisholm17, Eric B Larson6, Gail P Jarvik11,12, Murray H Brilliant18, Catherine A McCarty19, Iftikhar J Kullo20, Jonathan L Haines21, Dana C Crawford21, Daniel R Masys22 & Dan M Roden1,23.; Nature Biotechnology Dec 2013, Vol. 31 Issue 12, p1102-1111; DOI: 10.1038/nbt.2749

 

Why I read it: Because EMR-based PheWAS could have a value as a tool for discovery of genotype-phenotype associations.
 

Favorite quote: “We envision a future with much larger genotyped populations linked to longitudinal EMRs. Such a population will facilitate detection of associations between rare diseases and dissection of genetic influences on prognosis, responses to medication and comorbidity risk.”

 

Short summary: The article reports the first large-scale application of the phenome-wide association study (PheWAS) paradigm within the electronic medical records.

 

Who should read this: Especially those interested in the new ways of utilising the full potential of already existing information.

 

 

Biobanking article of the week (21/2014)

Article: Cancer Patient Perceptions about Biobanking and Preferred Timing of Consent

Kathryn L. Braun, JoAnn U. Tsark, Amy Powers, Kristen Croom, Robert Kim, Francine C. Gachupin and Paul Morris; Biopreservation and Biobanking; Volume 12, Number 2, 2014, p.106-112; DOI: 10.1089/bio.2013.0083

 

Why I read it: Because patients are an important group of stakeholders and their overall perceptions of biobanking and research play a key role in building biorepositories that gather tissue.

 

Favorite quote: “Findings suggest that cancer patients would be receptive to donating tissue to biorepositories if they are educated on the importance of specimen-based research, are assured of high ethical standards, and are asked by their physician to participate.”

 

Short summary: The article presents the results of an interview study about cancer patients’ preferences for consent timing, who should approach them about biobank donations and their thoughts on biospecimen research participation.

 

Who should read this: Especially clinicians, specimen collectors and others who work with patients.

 

 

Biobanking article of the week (18/2014)  

Article: Introducing Research Initiatives into Healthcare: What Do Doctors Think?
L. Wyld, S. Smith, N. J. Hawkins, J. Long and R. L. Ward; Biopreservation and Biobanking; Volume 12, Number 2, 2014, p.91-98; DOI: 10.1089/bio.2013.0069

 

Why I read it: Because it is important that the opinions of the clinicians (as well as other stakeholders) are taken in consideration. The fact that the clinicians are motivated and feel appreciated for their efforts makes the organised collection of biological material possible.

 

Favorite quote: “Successful integration of research initiatives into hospitals requires early collaboration between the implementing team and the health care professionals to produce a plan that is sensitive to the needs of the health professionals and tailored to the hospital setting.”

 

Short summary: The article presents the results of an interview study about doctors’ views on the concept of institutionalised biobanking. The study was conducted in two public teaching hospitals in Sydney, where institutional biobanking was being introduced.

 

Who should read this: Especially those responsible for the design and implementation of the biobanking initiative to the health care system.  

 

 

Biobanking article of the week (15/2014)  

Article: The Role of Public-Private Partnerships: Translating Science to Improve Cancer Care in the Community
D. M. O'Brien, A. D. Kaluzny, C. G. Sheps; J Healthc Manag. 2014 Jan-Feb;59(1):17-29;

 

Why I read it: Because if used correctly, public-private partnerships could be an efficient way to improve the overall quality of health care and to expand research.

 

Favorite quote: “Healthcare is a parochial business and the NCCCP (as a  public-private partnership) offers a breakthrough opportunity to transform care for cancer and other diseases.” 

 

Short summary: The article draws on the results of NCCCP (a public-private partnership program in the United States, launched by the National Cancer Institute). The program aimed to enhance access to cancer care, improve quality of care and expand research.

 

Who should read this: Anyone interested in adding collaboration and improving the management or the overall quality of health care. 

  

 

Biobanking article of the week (13/2014)  

Article: A human rights approach to an international code of conduct for genomic and clinical data sharing
B. M. Knoppers, J. R. Harris, I. Budin-Ljøsne, E. S. Dove; Hum Genetics (2014 Feb 27 ); DOI 10.1007/s00439-014-1432-6

 

Why I read it: Because the idea of a common ethical and legal framework to improve data sharing is intriguing.

 

Favorite quote: “[The code] can help move us beyond risk-focused principles and policies to a framework that views genomic and clinical databases as global public goods that must be respected, protected, and promoted, and that draws a roadmap for conducting collaborative genome science in an ethically responsible, solidaristic manner.

 

Short summary: The authors introduce ethical, legal, social and administrational obstacles for data sharing and propose an international code of conduct to be set within the human rights framework. The code of conduct is to both realise and maximise the sharing of scientific progress and its applications for all while providing proper attribution for scientific producers.

 

Who should read this: Anyone who wishes to see a more cooperative international scientific community.

 

 

Biobanking article of the week (12/2014)

Article: A Review of the Barriers to Sharing in Biobanking

F. Colledge, B. Elger, H. C. Howard

Biopreservation and Biobanking. December 2013, 11(6): 339-346. doi: 10.1089/bio.2013.0039

 

Why I read it: To get a more systematically compiled overview of the challenges to sharing in biobanking addressed in the literature.

 

Favorite quote: “Biobanks have not yet fulfilled their potential, and overcoming obstacles to their efficient operation is essential. The consolidation of this list of issues is the necessary first step to studying the existing problems, and ultimately finding solutions.”

 

Short summary: A description of the barriers to sample sharing currently identified in the literature, followed by discussion around the key themes. 

 

Who should read this: All the stakeholders who wish to improve the operational environment in biobanking.

 

 

Biobanking article of the week (11/2014)

Article: Targeting Cryopreservation-Induced Cell Death: A Review

A. Bissoyi, B. Nayak, K. Pramanik, S. K. Sarangi

Biopreservation and Biobanking. February 2014, 12(1): 23-34. doi:10.1089/bio.2013.0032.

 

Why I read it: To gain a view of the possibilities in the development of cryopreservation techniques.

 

Favorite quote: “Inhibiting the cell death-associated molecular responses in apoptosis and necrosis has undoubtedly improved the cellular response to cryopreservation.”

 

Short summary: An overview of various cell death pathways, molecules mediating cryopreservation-induced apoptosis and the potential of certain molecules in targeting cryopreservation-induced delayed-onset cell death. 

 

Who should read this: Those interested in up-to-date information about the possibilities in cryopreservation.

 

 

Biobanking article of the week (10/2014)

Article: Differences between blood donors and a population sample: implications for case-control studies

J. Golding, K. Northstone, L.L. Miller, G. D. Smith and M. Pembrey

International Journal of Epidemiology (2013): doi:10.1093/ije/dyt095

 

Why I read it: Informative to researchers when selecting appropriate controls for genetic studies.

 

Favorite quote: “..the key message from our study is that control samples chosen as representative of the population may not be appropriate as comparison populations for common diseases unless they include information that will allow the exclusion of individuals who have developed or will develop the disease.”

 

Short summary: This article discusses the selection of appropriate controls for genetic studies, particularly the value of blood donors as control groups.

 

Who should read this: Researchers working in the area of common diseases.

 

O. Törnwall 3.3.2014, Helsinki 

 

 

Biobanking article of the week (9/2014) 

Article: Incidental findings: the time is not yet ripe for a policy for biobanks

J. Viberg, MG Hansson, S. Langenskiöld, P Segerdahl; Eur J Hum Genet. 2013 Sep 25. doi: 10.1038/ejhg.2013.217

 

Why I read it: Because this article was written from an interdisciplinary point of view to raise an important and a belittled issue on the frame.

 

Favorite quote:Relevant ethical principles are applicable and support disclosure,; but do the conditions of analytical validity, clinical significance, and actionability imply the same straightforward beneficence to the disclosure of genetic risk information of unclear predictive value?

 

Short summary: The article goes through several arguments for and against disclosure on incidental findings for participants in biobanking research and points out that the complexity of multifactoral diseases and not understanding the uncertainty of unproven predictive value may leave the participants baffled and even under a misconception.

 

Who should read this: Anyone who wants to know the main reasons why disclosure on incidental findings isn’t such a simple issue.  

 

 

Here is the third biobanking article of the week (8/2014)

Article: ERIC: a new governance tool for Biobanking

J. Reichel, AS. Lind, M.G. Hansson and JE. Litton; European Journal of Human Genetics (2014): doi:10.1038/ejhg.2014.6

 

Why I read it: ERIC within biobanking research was recently established (Nov 2013), thus the topic is current as ERIC is about to start its work in earnest.

 

Favorite quote: “The ERIC provides a platform for not only the researchers themselves but also their Member States to cooperate on a long term basis, enabling the participants to develop tools for better navigation in the complex European legal landscape”

 

Short summary: This article analyses the benefits of ERIC that are provided to researchers in biobanking with a focus on legal and ethical perspectives.

 

Who should read this: All the researchers in the biobanking field.

 

O. Törnwall 17.2.2014, Helsinki  

 

 

Here is the second biobanking article of the week (7/2014)

Article: International guidelines on biobank research leave researchers in ambiguity: why is this so?

J. Stjernschantz Forsberg, M. Hansson, K. Evers; Eur J Epidemiol (2013) 28:449-451 

 

Why I read it: Because ethical issues are key factors when obtaining public trust for biobanking. Without public trust, the biobanks won’t be able to function. 

 

Favorite quote: “By not routinely requiring consent the prerequisites for conducting this kind of observational research are improved, and by ensuring that individuals can influence the general conditions under which research is done their right to decide is respected in a responsible and reasonable way.” 

 

Short summary: The role of informed consent in biobanking research has been viewed from a too narrow perspective. 

 

Who should read this: Those biobankers particularly interested in the ethical guidelines. 

 

 

Here is the first biobanking article of the week (6/2014):

Article: A big step for Finnish biobanking
J. Stjernschantz Forsberg and S. Soini; Nature Review Genetics (2014) 15, 6

 

Why I read it: As an operator working in the biobanking field, I’m interested in the new law and its contents.

 

Favorite quote: “…the new legislation is unique in combining two key aspects: the possibility to store samples with broad consent for future research and the opt-out mechanism that is used to include existing samples. Time will tell whether the Finnish example can influence legislators in other countries.”

 

Short summary: In September 2013, a new biobanking law entered into force in Finland. The article briefly describes the new law and its main aspects.

 

Who should read this: All biobankers in Finland and elsewhere.