National Academies Press: OpenBook
« Previous: Appendix B: Glossary
Suggested Citation:"Appendix C: Table of International Programs." National Academies of Sciences, Engineering, and Medicine. 2023. Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. Washington, DC: The National Academies Press. doi: 10.17226/26902.
×

C

Table of International Programs

TABLE C-1 International Programs

Name Country/Region Short Description Population Descriptors Used
BioBank Japan (BBJ) Japan BBJ was started in 2003 as a disease biobank. Since 2018, the aim of the biobank is to use the registered samples and data for genomics and clinical research (BBJ, 2021). None
Brazilian Initiative on Precision Medicine (BIPMed) Brazil The aim is to offer public access to genomic and phenotypic data from Brazil to scientists and clinicians around the world. It is the Brazilian Country Node of the Human Variome Project (HVP) (BIPMed, n.d.). Birth location in Brazil
China Kadoorie Biobank (CKB) China The over half a million participants were recruited from 10 geographically defined and diverse regions of China (CKB, n.d.). None
Suggested Citation:"Appendix C: Table of International Programs." National Academies of Sciences, Engineering, and Medicine. 2023. Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. Washington, DC: The National Academies Press. doi: 10.17226/26902.
×
deCODE genetics Iceland This database is made up of genotypic and medical information for more than 160,000 participants which makes up over half of the adult population in Iceland. These data are used in gene discovery work (deCODE, 2016). Geographic location in Iceland
Estonian Biobank Estonia Population-based biobank that has a cohort of over 200,000 individuals which makes up about 20% of the adult population in Estonia. The current cohort is reflective of the age, sex, and geographical distribution of adults in Estonia: Estonians represent 83%, Russians 14%, and other nationalities 3% (UT, 2021). Place of birth, place(s) of living, nationality
Health and Aging in Africa: A Longitudinal Study of an INDEPTH Community in South Africa (HAALSI) South Africa Community-based cohort of 5,059 men and women who are 40 or older. The aim of the study is to identify characteristics of the aging process in rural South Africa (HAALSI, 2022). Country of origin and languages spoken
Korea Biobank Project (KBP) South Korea The purpose of KBP is to collect and manage human bioresources for future use in research. In 2018, the biobank was made up of 852,769 participants (KBP, n.d.). None
Malaysia Cohort Study Malaysia Aims to recruit 100,000 individuals aged 35–70 years to identify risk factors, gene–environment interactions, and biomarkers for cancer and other diseases (Jamal et al., 2015). Ethnicity—Malay, Chinese, Indian, Other; Locality—urban or rural
Suggested Citation:"Appendix C: Table of International Programs." National Academies of Sciences, Engineering, and Medicine. 2023. Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. Washington, DC: The National Academies Press. doi: 10.17226/26902.
×
Mexican Biobank (MXB) Mexico To date, they have genotyped 6,057 Mexican individuals who are linked with their demographic and medical data. The individuals were recruited from all 32 states with specific efforts made to include those who speak an Indigenous language (Sohail et al., 2022). Geography and genetic ancestry
Prospective Epidemiological Research Studies in Iran (PERSIAN Cohort Study) Iran Aims to recruit 180,000 individuals aged 35–70 years from 18 regions in Iran. The study is designed to be ethnically representative and recruit across diverse geographies of the country (Poustchi et al., 2018). Ethnicity
Qatar Biobank (QBB) Qatar The population cohort aims to recruit 60,000 participants. The goal of the biobank is to collect information to study how lifestyle, environment, and genes affect health locally in Qatar (Fthenou et al., 2019). Ethnicity—Qataris, long-term residents who are members of Arab groups other than Qatari, and long-term residents of non-Arab groups. Members of Arab group other than Qatari include Algerian, Bahraini, Egyptian, Emirian, Iraqi, Jordanian, Kuwaiti, Lebanese, Mauritanian, Moroccan, Omani, Palestinian, Saudi Arabian, Somali, Sudanese, Syrian, Tunisian, Emirati, and Yemeni. Non-Arab groups include: American, Armenian, Bangladeshi, Canadian, Cypriot, Ethiopian, Indian, Iranian, Japanese, Dutch, Pakistani, Filipino, Tajikistani, and British (Al Thani et al., 2019).
Suggested Citation:"Appendix C: Table of International Programs." National Academies of Sciences, Engineering, and Medicine. 2023. Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. Washington, DC: The National Academies Press. doi: 10.17226/26902.
×
Singapore National Precision Medicine Program Singapore Three-phase program to implement precision health. Phase I collected 10,000 genomes for a reference database, phase II aims to collect 100,000 genomes of healthy individuals and 50,000 from people with specific diseases, and phase III will implement precision medicine (PRECISE, 2022). Self-reported ethnicity, inferred ethnicity, and inferred ancestry based on genotyping
Taiwan Biobank Taiwan The aim of the biobank is to improve medical care. The biobank was established in 2012 and has recruited over 176,000 individuals with a goal of 200,000 participants (Wei et al., 2021). Ancestry—Han Chinese including Taiwanese Minnan, Taiwanese Hakka, and ancestries across China: East China, South Central China, North and Northeast China, and Southwest China and other East Asian groups
National Laboratory for the Genetics of Israeli Populations Israel The laboratory is meant to be a national repository for DNA samples and human cell lines that are representative of the variation in Israel and several Middle Eastern populations (Mcgonigle, 2021). Self-identified ethnicity—Palestinian, Druze, Bedouin, and Jewish. Jewish is broken down further into the following subcategories: Ashkenazi (central European ancestry), Ethiopian, Georgian, Iranian, Iraqi, Kuchin (India), Libyan, Moroccan, Sephardi (Turkey and Bulgaria), Tunisian, Yemenite
UK Biobank United Kingdom Genetic and health information of over half a million participants in the UK (Fry et al., 2017). Self-reported ethnicity which includes white (white British, white Irish, and other white background), black or black British (Caribbean, African, or other black background), Mixed (white and black Caribbean, white and black African, white and Asian, and other mixed ethnic background), Indian, Pakistani, Bangladeshi, Chinese, other Asian, other ethnic group (Fry et al., 2017).
Suggested Citation:"Appendix C: Table of International Programs." National Academies of Sciences, Engineering, and Medicine. 2023. Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. Washington, DC: The National Academies Press. doi: 10.17226/26902.
×

REFERENCES

Al Thani, A., E. Fthenou, S. Paparrodopoulos, A. Al Marri, Z. Shi, F. Qafoud, and N. Afifi. 2019. Qatar Biobank cohort study: Study design and first results. American Journal of Epidemiology 188(8):1420-1433.

BBJ (Biobank Japan). 2021. Biobank Japan. https://biobankjp.org/en/index.html (accessed October 24, 2022).

BIPMed (Brazilian Initiative on Precision Medicine). n.d. About BIPMed. https://bipmed.org/about.html (accessed October 24, 2022).

CKB (China Kadoorie Biobank). n.d. Aims and rationale. https://www.ckbiobank.org/about-us/aims-and-rationale (accessed October 25, 2022).

deCODE (deCODE Genetics). 2016. Science. https://www.decode.com/research/ (accessed October 25, 2022).

Fry, A., T. J. Littlejohns, C. Sudlow, N. Doherty, L. Adamska, T. Sprosen, R. Collins, and N. E. Allen. 2017. Comparison of sociodemographic and health-related characteristics of UK biobank participants with those of the general population. American Journal of Epidemiology 186(9):1026-1034.

Fthenou, E., A. Al Thani, A. Al Marri, and N. Afifi. 2019. Qatar Biobank: A paradigm of translating biobank science into evidence-based health care interventions. Biopreservation and Biobanking 17(6):491-493.

HAALSI (Health and Aging in Africa: A Longitudinal Study of an INDEPTH Community in South Africa). 2022. About HAALSI. https://haalsi.org/about (accessed October 24, 2022).

Jamal, R., S. Z. Syed Zakaria, M. A. Kamaruddin, N. Abd Jalal, N. Ismail, N. Mohd Kamil, N. Abdullah, N. Baharudin, N. H. Hussin, H. Othman, and N. M. Mahadi. 2015. Cohort profile: The Malaysian cohort (TMC) project: A prospective study of non-communicable diseases in a multi-ethnic population. International Journal of Epidemiology 44(2):423-431.

KBP (Korea Biobank Project). n.d. Policy and services. https://www.kdca.go.kr/contents.es?mid=a30326000000 (accessed October 25, 2022).

Mcgonigle, I. 2021. National biobanking in Qatar and Israel: Tracing how global scientific institutions mediate local ethnic identities. Science, Technology and Society 26(1):146-165.

Poustchi, H., S. Eghtesad, F. Kamangar, A. Etemadi, A. A. Keshtkar, A. Hekmatdoost, Z. Mohammadi, Z. Mahmoudi, A. Shayanrad, F. Roozafzai, M. Sheikh, A. Jalaeikhoo, M. H. Somi, F. Mansour-Ghanaei, F. Najafi, E. Bahramali, A. Mehrparvar, A. Ansari-Moghaddam, A. A. Enayati, A. Esmaeili Nadimi, A. Rezaianzadeh, N. Saki, F. Alipour, R. Kelishadi, A. Rahimi-Movaghar, N. Aminisani, P. Boffetta, and R. Malekzadeh. 2018. Prospective epidemiological research studies in Iran (the PERSIAN Cohort Study): Rationale, objectives, and design. American Journal of Epidemiology 187(4):647-655.

PRECISE (Singapore National Precision Medicine Program). 2022. About us. https://www.npm.sg/about-us/our-story/ (accessed October 25, 2022).

Sohail, M., A. Y. Chong, C. D. Quinto-Cortes, M. J. Palma-Martínez, A. Ragsdale, S. G. Medina-Muñoz, C. Barberena-Jonas, G. Delgado-Sánchez, L. P. Cruz-Hervert, L. Ferreyra-Reyes, E. Ferreira-Guerrero, N. Mongua-Rodríguez, A. Jimenez-Kaufmann, H. Moreno-Macías, C. A. Aguilar-Salinas, K. Auckland, A. Cortés, V. Acuña-Alonzo, A. G. Ioannidis, C. R. Gignoux, G. L. Wojcik, S. L. Fernández-Valverde, A. V. S. Hill, M. T. Tusié-Luna, A. J. Mentzer, J. Novembre, L. García-García, and A. Moreno-Estrada. 2022. Nationwide genomic biobank in Mexico unravels demographic history and complex trait architecture from 6,057 individuals. bioRxiv 2022.07.11.499652.

Suggested Citation:"Appendix C: Table of International Programs." National Academies of Sciences, Engineering, and Medicine. 2023. Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. Washington, DC: The National Academies Press. doi: 10.17226/26902.
×

UT (University of Tartu). 2021. Estonian biobank. https://genomics.ut.ee/en/content/estonian-biobank (accessed October 25, 2022).

Wei, C.-Y., J.-H. Yang, E.-C. Yeh, M.-F. Tsai, H.-J. Kao, C.-Z. Lo, L.-P. Chang, W.-J. Lin, F.-J. Hsieh, S. Belsare, A. Bhaskar, M.-W. Su, T.-C. Lee, Y.-L. Lin, F.-T. Liu, C.-Y. Shen, L.-H. Li, C.-H. Chen, J. D. Wall, J.-Y. Wu, and P.-Y. Kwok. 2021. Genetic profiles of 103,106 individuals in the Taiwan biobank provide insights into the health and history of Han Chinese. Genomic Medicine 6(1):10.

Suggested Citation:"Appendix C: Table of International Programs." National Academies of Sciences, Engineering, and Medicine. 2023. Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. Washington, DC: The National Academies Press. doi: 10.17226/26902.
×
Page 187
Suggested Citation:"Appendix C: Table of International Programs." National Academies of Sciences, Engineering, and Medicine. 2023. Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. Washington, DC: The National Academies Press. doi: 10.17226/26902.
×
Page 188
Suggested Citation:"Appendix C: Table of International Programs." National Academies of Sciences, Engineering, and Medicine. 2023. Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. Washington, DC: The National Academies Press. doi: 10.17226/26902.
×
Page 189
Suggested Citation:"Appendix C: Table of International Programs." National Academies of Sciences, Engineering, and Medicine. 2023. Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. Washington, DC: The National Academies Press. doi: 10.17226/26902.
×
Page 190
Suggested Citation:"Appendix C: Table of International Programs." National Academies of Sciences, Engineering, and Medicine. 2023. Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. Washington, DC: The National Academies Press. doi: 10.17226/26902.
×
Page 191
Suggested Citation:"Appendix C: Table of International Programs." National Academies of Sciences, Engineering, and Medicine. 2023. Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field. Washington, DC: The National Academies Press. doi: 10.17226/26902.
×
Page 192
Next: Appendix D:Decision Tree for the Use of Population Descriptors in Genomics Research »
Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field Get This Book
×
 Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field
Buy Paperback | $25.00 Buy Ebook | $20.99
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

Genetic and genomic information has become far more accessible, and research using human genetic data has grown exponentially over the past decade. Genetics and genomics research is now being conducted by a wide range of investigators across disciplines, who often use population descriptors inconsistently and/or inappropriately to capture the complex patterns of continuous human genetic variation.

In response to a request from the National Institutes of Health, the National Academies assembled an interdisciplinary committee of expert volunteers to conduct a study to review and assess existing methodologies, benefits, and challenges in using race, ethnicity, ancestry, and other population descriptors in genomics research. The resulting report focuses on understanding the current use of population descriptors in genomics research, examining best practices for researchers, and identifying processes for adopting best practices within the biomedical and scientific communities.

READ FREE ONLINE

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text.

    « Back Next »
  6. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  7. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  8. ×

    View our suggested citation for this chapter.

    « Back Next »
  9. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!