List of biobanks

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A biobank is a physical place which stores biological specimens. In some cases, participant data is also collected and stored. Access policies details may vary across biobanks but generally involve obtaining ethics approval from institutional review boards (IRB) and scientific review or peer review approval from the institutions under which the biobanks operate as well as Ethics approval from the institutions where the research projects will be undertaken. The samples and data are safeguarded so that researchers can use them in experiments deemed adequate. This article contains a list of biobanks.[ citation needed ]

Contents

Classification

Biobanks can be classified in several ways. Some examples of how they can be classified is by their controlling entity (government, commercial enterprise, or private research institution), by their geographical location, or by what sorts of samples they collect.

Biobanks may be classified by purpose or design. Disease-oriented biobanks usually have a hospital affiliation through which they collect samples representing a variety of diseases, perhaps to look for biomarkers affiliated with disease. [1] Population-based biobanks need no particular hospital affiliation because they sample from large numbers of all kinds of people, perhaps to look for biomarkers for disease susceptibility in a general population. [2]

List of biobanks
BiobankAffiliationFocusTypeLocationFoundingNotes
All of Us Populationnon-profitUnited States
Autism Genetic Resource Exchange Autism Speaks Autism non-profitNorth America and Asia
Avon Longitudinal Study of Parents and Children University of Bristol non-profitUnited Kingdom1990 [3] [4]
BioBank Graz Medical University of Graz non-profitAustria [5]
BioBank Japan RIKEN, University of Tokyo Population, personalized medicinenon-profitJapan2003 [6]
Canadian Biosample Repository University of Alberta non-profitCanada
CARTaGENE biobank Centre hospitalier universitaire Sainte-Justine non-profitQuebec2009 [7] [8]
Cooperative Human Tissue Network Cancer governmentUSA1987
Coriell Institute for Medical Research Genetic Disorders, rare diseases, Stem Cells non-profitUnited States1953
DeCODE genetics commercialIceland [9]
Estonian Genome Project University of Tartu non-profitEstonia2000
EuroBioBank Rare diseasesnon-profitEurope
FINBBPopulationnon-profitFinland [10]
FinnGen Population, disease focusedpublic-privateFinland2017 [11]
Generation Scotland NHS Scotland governmentScotland1999 [12] [13]
Genomics England Rare diseases, cancer public-privateEngland2013 [14]
HUNT Biobank Norwegian University of Science and Technology non-profitNorway2002
Integrated Biobank of LuxembourgLuxembourg Institute of HealthCancer, immunologyLuxembourg
Interdisziplinäre Biomaterial- und Datenbank Würzburg University of Würzburg & Universitätsklinikum Würzburgpublic agencyWürzburg, Germany2013 [15]
Kaiser Permanente Research Bank Kaiser Permanente PopulationUnited States2016 [16] [17]
Lifelines University of Groningen & University Medical Centre Groningen Healthy agingnon-profitGroningen, The Netherlands2006
Million Veterans Project United States Department of Veterans Affairs American veteransnon-profitUnited States [18]
MyCode Geisinger Health System Electronic health records, personalized medicinecommercialPennsylvania, United States2007 [19]
nPOD University of Florida, JDRF Diabetes non-profitUnited States2007 [20]
PATH Biobank Breast cancer non-profitGermany2002
Plasma Services GroupAutoimmune, Infectious, Coagulation, Diagnostics [21] commercialUnited States2017
Sapien Biosciences Apollo Hospitals & Saarum InnovationsPopulation, with special focus on tailoring treatment for Cancer privateIndia (headquartered in Hyderabad)2012 [22]
Signature biobank  [ fr ]Research centre of the Montreal Mental Health Institute Mental health non-profitCanada (Quebec)2012 [23]
The Malaysian Cohort National University of Malaysia non-profitMalaysia2003
Tohoku Medical Megabank Project Tohoku University, Iwate Medical University Population, Birth and Three-Generationnon-profitJapan2012 [24] [25]
UK Biobank non-profitUnited Kingdom2006 [26]
Biobank Sweden Health and Social Care Inspectorate Collaborative biobank infrastructure (nearly 250 biobanks)governmentSweden2017 [27] [28]

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<span class="mw-page-title-main">UK Biobank</span> Long-term biobank study of 500,000 people

UK Biobank is a large long-term biobank study in the United Kingdom (UK) which is investigating the respective contributions of genetic predisposition and environmental exposure to the development of disease. It began in 2006.

Genetic discrimination occurs when people treat others differently because they have or are perceived to have a gene mutation(s) that causes or increases the risk of an inherited disorder. It may also refer to any and all discrimination based on the genotype of a person rather than their individual merits, including that related to race, although the latter would be more appropriately included under racial discrimination. Some legal scholars have argued for a more precise and broader definition of genetic discrimination: "Genetic discrimination should be defined as when an individual is subjected to negative treatment, not as a result of the individual's physical manifestation of disease or disability, but solely because of the individual's genetic composition." Genetic Discrimination is considered to have its foundations in genetic determinism and genetic essentialism, and is based on the concept of genism, i.e. distinctive human characteristics and capacities are determined by genes.

<span class="mw-page-title-main">Medical genetics</span> Medicine focused on hereditary disorders

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<span class="mw-page-title-main">Ancestry-informative marker</span>

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<span class="mw-page-title-main">Biobank</span> Repository of biological samples used for research

A biobank is a type of biorepository that stores biological samples for use in research. Biobanks have become an important resource in medical research, supporting many types of contemporary research like genomics and personalized medicine.

Genetic epidemiology is the study of the role of genetic factors in determining health and disease in families and in populations, and the interplay of such genetic factors with environmental factors. Genetic epidemiology seeks to derive a statistical and quantitative analysis of how genetics work in large groups.

Generation Scotland is a biobank, a resource of biological samples and information on health and lifestyle from thousands of volunteer donors in Scotland.

HUNT Biobank is a biorepository, located in Levanger, Norway. It was established in conjunction with the cohort study Trøndelag Health Study (HUNT). The biobank is part of HUNT Research Centre, which is responsible for collecting and providing access to the data and samples from the health study, and the research centre is part of the Faculty of Medicine and Health Sciences at the Norwegian University of Science and Technology (NTNU).

<span class="mw-page-title-main">Biological specimen</span> Laboratory specimen used in biological research

A biological specimen is a biological laboratory specimen held by a biorepository for research. Such a specimen would be taken by sampling so as to be representative of any other specimen taken from the source of the specimen. When biological specimens are stored, ideally they remain equivalent to freshly-collected specimens for the purposes of research.

Biobank ethics refers to the ethics pertaining to all aspects of biobanks. The issues examined in the field of biobank ethics are special cases of clinical research ethics.

Privacy for research participants is a concept in research ethics which states that a person in human subject research has a right to privacy when participating in research. Some typical scenarios this would apply to include, or example, a surveyor doing social research conducts an interview with a participant, or a medical researcher in a clinical trial asks for a blood sample from a participant to see if there is a relationship between something which can be measured in blood and a person's health. In both cases, the ideal outcome is that any participant can join the study and neither the researcher nor the study design nor the publication of the study results would ever identify any participant in the study. Thus, the privacy rights of these individuals can be preserved.

<span class="mw-page-title-main">Estonian Genome Project</span> Institution and population-based biological database located in Estonia

The Estonian Genome Project is a population-based biological database and biobank which was established in 2000 to improve public health in Estonia. It contains health records and biological specimens from a large percentage of the Estonian population.

CARTaGENE is a population based cohort based on an ongoing and long-term health study of 40, 000 men and women in Québec. It is a regional cohort member of the Canadian Partnership for Tomorrow's Health (CanPath). The project's core mandate is to identify the genetic and environmental causes of common chronic diseases affecting the Québec population. The overall objective from a public health perspective is to develop personalized medicine and public policy initiatives targeting high-risk groups. CARTaGENE is under the scientific direction of Sébastien Jacquemont, Ekaterini Kritikou, and Philippe Broët of the Sainte-Justine Children's Hospital University Health Center. Based in Montréal Québec, Canada, CARTaGENE is operated under the infrastructure of the Sainte-Justine Children's Hospital University Health Center and has seen funding from Genome Canada, the Canadian Foundation for Innovation and Génome Québec and the Canadian Partnership Against Cancer (CPAC) since 2007 among other sources. The program was initially founded by Professors Claude Laberge and Bartha Knoppers, and developed through two phases of participant recruitment under the direction of Professor Philip Awadalla as Scientific Director of the cohort from 2009 to 2015, who is now the National Scientific Director of the Canadian Partnership for Tomorrow's Health (CanPath).

<span class="mw-page-title-main">Polygenic score</span> Numerical score aimed at predicting a trait based on variation in multiple genetic loci

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<span class="mw-page-title-main">Tohoku Medical Megabank Project</span>

The Tohoku Medical Megabank Project is a national project in Japan. The mission of the Tohoku Medical Megabank (TMM) project is to carry out a long-term health survey in the Miyagi and Iwate prefectures, which were affected by the Great East Japan Earthquake, and provide the research infrastructure for the development of personalized medicine by establishing a biobank and conducting cohort studies. It started in 2012.

<span class="mw-page-title-main">Katrina A. B. Goddard</span> American genetic epidemiologist and biostatistician

Katrina A. Blouke Goddard is an American genetic epidemiologist and biostatistician specializing in public health genomics and the translation of genomic applications into clinical practice. Goddard is the director of the division of cancer control and population sciences (DCCPS) at the National Cancer Institute (NCI). She was previously the distinguished investigator and director of translational and applied genomics at the Kaiser Permanente Center for Health Research and a faculty member at Case Western Reserve University.

References

  1. ↑ Bevilacqua, G.; Bosman, F.; Dassesse, T.; Höfler, H.; Janin, A.; Langer, R.; Larsimont, D.; Morente, M. M.; Riegman, P.; Schirmacher, P.; Stanta, G.; Zatloukal, K.; Caboux, E.; Hainaut, P. (2010). "The role of the pathologist in tissue banking: European Consensus Expert Group Report". Virchows Archiv. 456 (4): 449–454. doi:10.1007/s00428-010-0887-7. PMC   2852521 . PMID   20157825.
  2. ↑ Riegman, P. H. J.; Morente, M. M.; Betsou, F.; De Blasio, P.; Geary, P.; Marble Arch International Working Group on Biobanking for Biomedical Research (2008). "Biobanking for better healthcare". Molecular Oncology. 2 (3): 213–222. doi:10.1016/j.molonc.2008.07.004. PMC   5527804 . PMID   19383342.
  3. ↑ Boyd, A.; Golding, J.; Macleod, J.; Lawlor, D. A.; Fraser, A.; Henderson, J.; Molloy, L.; Ness, A.; Ring, S.; Davey Smith, G. (16 April 2012). "Cohort Profile: The 'Children of the 90s'--the index offspring of the Avon Longitudinal Study of Parents and Children". International Journal of Epidemiology. 42 (1): 111–127. doi:10.1093/ije/dys064. PMC   3600618 . PMID   22507743.
  4. ↑ Levitt, Mairi (2011). "Relating to Participants: How Close Do Biobanks and Donors Really Want to Be?". Health Care Analysis. 19 (3): 220–230. doi:10.1007/s10728-011-0193-9. PMID   21915714. S2CID   13953737.
  5. ↑ "About Biobank Graz" . Retrieved 2021-03-16.
  6. ↑ Nagai, Akiko; Hirata, Makoto; Kamatani, Yoichiro; Muto, Kaori; Matsuda, Koichi; Kiyohara, Yutaka; Ninomiya, Toshiharu; Tamakoshi, Akiko; Yamagata, Zentaro; Mushiroda, Taisei; Murakami, Yoshinori (March 2017). "Overview of the BioBank Japan Project: Study design and profile". Journal of Epidemiology. 27 (3): S2–S8. doi:10.1016/j.je.2016.12.005. PMC   5350590 . PMID   28189464.
  7. ↑ Awadalla, Philip; Catherine Boileau; Yves Payette; Youssef Idaghour; Jean-Philippe Goulet; Bartha Knoppers; Pavel Hamet; Claude Laberge (October 15, 2012). "Cohort profile of the CARTaGENE study: Quebec's population-based biobank for public health and personalized genomics". International Journal of Epidemiology. 42 (5): 1285–99. doi: 10.1093/ije/dys160 . PMID   23071140.
  8. ↑ "Cartagene". cartagene.qc.ca. Retrieved 3 April 2013.
  9. ↑ "From Genes to Drugs". decode.com. deCODE genetics. Archived from the original on 2008-05-09. Retrieved 2008-05-04.
  10. ↑ "FinBioBank" . Retrieved 2019-11-23.
  11. ↑ "FinnGen-tutkimushanke vie suomalaiset löytöretkelle genomitietoon | Drupal". finngen.fi. Retrieved 2019-11-23.
  12. ↑ Smith BH, Campbell H, Blackwood D, et al. (2006). "Generation Scotland: the Scottish Family Health Study; a new resource for researching genes and heritability". BMC Medical Genetics. 7: 74. doi: 10.1186/1471-2350-7-74 . PMC   1592477 . PMID   17014726.
  13. ↑ Macleod AK, Liewald DC, McGilchrist MM, Morris AD, Kerr SM, Porteous DJ (February 2009). "Some principles and practices of genetic biobanking studies". The European Respiratory Journal. 33 (2): 419–25. doi: 10.1183/09031936.00043508 . PMID   19181915.
  14. ↑ "Genomics England | 100,000 Genomes Project" . Retrieved 2019-11-23.
  15. ↑ "Interdisziplinäre Biomaterial- und Datenbank Würzburg". ukw.de. Retrieved 2022-10-13.
  16. ↑ "Kaiser Permanente Research Bank Collects Genetic and Environmental Data to Improve Health and Care Delivery". Kaiser Permanente. 11 April 2018.
  17. ↑ "Kaiser Permanente Research Bank". Kaiser Permanente. Retrieved 8 November 2018.
  18. ↑ Gaziano, John Michael; Concato, John; Brophy, Mary; Fiore, Louis; Pyarajan, Saiju; Breeling, James; Whitbourne, Stacey; Deen, Jennifer; Shannon, Colleen; Humphries, Donald; Guarino, Peter (February 2016). "Million Veteran Program: A mega-biobank to study genetic influences on health and disease". Journal of Clinical Epidemiology. 70: 214–223. doi: 10.1016/j.jclinepi.2015.09.016 . PMID   26441289.
  19. ↑ Carey, David J.; Fetterolf, Samantha N.; Davis, F. Daniel; Faucett, William A.; Kirchner, H. Lester; Mirshahi, Uyenlinh; Murray, Michael F.; Smelser, Diane T.; Gerhard, Glenn S.; Ledbetter, David H. (2016). "The Geisinger MyCode community health initiative: an electronic health record–linked biobank for precision medicine research". Genetics in Medicine. Elsevier BV. 18 (9): 906–913. doi: 10.1038/gim.2015.187 . ISSN   1098-3600. PMC   4981567 . PMID   26866580.
  20. ↑ "JDRF nPOD | Network for Pancreatic Organ Donors with Diabetes". jdrfnpod.org. Retrieved 2016-09-22.
  21. ↑ "Plasma Services Group - The Difference is in The Data". Plasma Services Group. Retrieved 2020-12-11.
  22. ↑ "Sapien Biosciences | Asia's first biobank led CDx & phenotypic drug discovery company" . Retrieved 2020-11-19.
  23. ↑ "Banque Signature | Accès aux données et aux biospécimens". Banque Signature (in French). Retrieved 2023-03-27.
  24. ↑ "ToMMo ｜ Tohoku Medical Megabank Organization". ToMMo ｜ Tohoku Medical Megabank Organization (in Japanese). 2015-02-10. Retrieved 2021-12-27.
  25. ↑ "IWATE TOHOKU MEDICAL MEGABANK ORGANIZATION". IWATE TOHOKU MEDICAL MEGABANK ORGANIZATION (in Japanese). Retrieved 2022-01-05.
  26. ↑ "UK Biobank" . Retrieved 2019-11-23.
  27. ↑ "Guide to Biobanks in Sweden" (PDF). biobanksverige.se. Retrieved 2023-03-03.
  28. ↑ "About Biobank Sweden". biobanksverige.se. Retrieved 2023-03-03.
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