The Global State of the Genetic Counseling Profession

MaryAnn Abacan¹, Lamia Alsubaie², Kristine Barlow-Stewart³, Beppy Caanen⁴, Christophe Cordier⁵, Eliza Courtney⁶, Emeline Davoine⁷, Janice Edwards⁸, Niby J Elackatt⁹, Kate Gardiner¹⁰, Yue Guan¹¹, Lian-Hua Huang^{12

13}, Charlotta Ingvoldstad Malmgren^{14

15

16

17}, Sahil Kejriwal¹⁸, Hyon J Kim¹⁹, Deborah Lambert²⁰, Paulina Araceli Lantigua-Cruz²¹, Juliana M H Lee²², Marianne Lodahl²³, Åshild Lunde²⁴, Shelley Macaulay²⁵, Ivan Macciocca²⁶, Sonia Margarit²⁷, Anna Middleton^{28

29}, Ramona Moldovan³⁰, Joanne Ngeow⁶, Alexandra J Obregon-Tito³¹, Kelly E Ormond^{32

33}, Milena Paneque³⁴, Karen Powell³⁵, Kunal Sanghavi³⁶, Diana Scotcher³⁷, Jenna Scott³⁸, Clara Serra Juhé³⁹, Shiri Shkedi-Rafid⁴⁰, Tina-Marié Wessels⁴¹, Sook-Yee Yoon^{42

43

22}, Catherine Wicklund⁴⁴

Affiliations

¹ Institute of Human Genetics, National Institutes of Health, University of the Philippines Manila, Manila, Philippines.
² King Abdullah Specialized Children's Hospital (KASCH), King Abdulaziz Medical City, Riyadh, Saudi Arabia.
³ Northern Clinical School, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia.
⁴ Department of Clinical Genetics, Maastricht University Medical Centre, Maastricht, The Netherlands.
⁵ Department of Genetics, SYNLAB Genetics, Lausanne, Switzerland.
⁶ Cancer Genetics Service, Division of Medical Oncology, National Cancer Centre, Singapore, Singapore.
⁷ Lausanne University Hospital (CHUV), Lausanne, Switzerland.
⁸ Transnational Alliance for Genetic Counseling, University of South Carolina Genetic Counseling Program, University of South Carolina, Columbia, SC, USA.
⁹ Organization for Rare Diseases India, Cloudnine Hospitals, Bangalore, India.
¹⁰ LifeLabs Genetics, Toronto, ON, Canada.
¹¹ Rollins School of Public Health, Emory University, Atlanta, GA, USA.
¹² School of Nursing, China Medical University, Taichung, Taiwan.
¹³ School of Nursing, College of Medicine, National Taiwan University, Taipei, Taiwan.
¹⁴ Center for Fetal Medicine and Clinical Genetics, Karolinska University Hospital, Stockholm, Sweden.
¹⁵ Department of Clinical Science, Intervention and Technology, Karolinska Institutet, Stockholm, Sweden.
¹⁶ Department of Public Health and Caring Science, Uppsala University, Uppsala, Sweden.
¹⁷ Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
¹⁸ Institute for Public Health Genetics, University of Washington, Seattle, USA.
¹⁹ Ajou Univ. Medical School and Konyang Univ. Graduate school, Yeongtong-gu, Suwon, South Korea.
²⁰ National Rare Diseases Office, Dublin, Ireland.
²¹ University of Medical Sciences of Havana, Havana, Cuba.
²² National University of Malaysia, Kuala Lumpur, Malaysia.
²³ Department of Clinical Genetics Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark.
²⁴ Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.
²⁵ Division of Human Genetics, Faculty of Health Sciences, University of the Witwatersrand & The National Health Laboratory Service, Johannesburg, South Africa.
²⁶ Victorian Clinical Genetics Services, Melbourne, Australia.
²⁷ Clínica Alemana Universidad del Desarrollo, Facultad de Medicina, Centro de Genética y Genómica, Santiago, Chile.
²⁸ Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK.
²⁹ Faculty of Education, University of Cambridge, Cambridge, UK.
³⁰ Department of Psychology, Babeș-Bolyai University, Cluj-Napoca, Romania.
³¹ University of Arkansas for Medical Sciences, Little Rock, AR, USA.
³² Department of Genetics and Stanford Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, CA, USA. kormond@stanford.edu.
³³ Stanford University School of Medicine, 300 Pasteur Drive, MC 5208, Stanford, CA, USA. kormond@stanford.edu.
³⁴ i3S - Instituto de Investigação e Inovação em Saúde, CGPP - Centre for Predictive and Preventive Genetics and IBMC - Institute for Molecular and Cell Biology, Universidade do Porto, Porto, Portugal.
³⁵ Cone Health Cancer Center, Greensboro, NC, USA.
³⁶ The Jackson Laboratory for Genomic Medicine, Farmington, CT, USA.
³⁷ Manchester Centre for Genomic Medicine, Manchester University Hospitals NHS Foundation Trust, Saint Mary's Hospital, Manchester, UK.
³⁸ University of British Columbia, Vancouver, BC, Canada.
³⁹ Departament de Ciències Experimentals i de la Salut, Universitat Pompeu Fabra, Institut Hospital del Mar d'Investigacions Mèdiques, Centro de Investigación Biomédica en Red de Enfermedades Raras, Barcelona, Spain.
⁴⁰ Hadassah Hebrew University Medical Center, Jerusalem, Israel.
⁴¹ Division Human Genetics, University of Cape Town, Cape Town, South Africa.
⁴² Cancer Research, Subang Jaya, Malaysia.
⁴³ University Malaya Medical Centre, Kuala Lumpur, Malaysia.
⁴⁴ Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.

PMID: 30291341
PMCID: PMC6336871
DOI: 10.1038/s41431-018-0252-x

Review

The Global State of the Genetic Counseling Profession

MaryAnn Abacan et al. Eur J Hum Genet. 2019 Feb.

. 2019 Feb;27(2):183-197.

doi: 10.1038/s41431-018-0252-x. Epub 2018 Oct 5.

Authors

Affiliations

¹ Institute of Human Genetics, National Institutes of Health, University of the Philippines Manila, Manila, Philippines.
² King Abdullah Specialized Children's Hospital (KASCH), King Abdulaziz Medical City, Riyadh, Saudi Arabia.
³ Northern Clinical School, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia.
⁴ Department of Clinical Genetics, Maastricht University Medical Centre, Maastricht, The Netherlands.
⁵ Department of Genetics, SYNLAB Genetics, Lausanne, Switzerland.
⁶ Cancer Genetics Service, Division of Medical Oncology, National Cancer Centre, Singapore, Singapore.
⁷ Lausanne University Hospital (CHUV), Lausanne, Switzerland.
⁸ Transnational Alliance for Genetic Counseling, University of South Carolina Genetic Counseling Program, University of South Carolina, Columbia, SC, USA.
⁹ Organization for Rare Diseases India, Cloudnine Hospitals, Bangalore, India.
¹⁰ LifeLabs Genetics, Toronto, ON, Canada.
¹¹ Rollins School of Public Health, Emory University, Atlanta, GA, USA.
¹² School of Nursing, China Medical University, Taichung, Taiwan.
¹³ School of Nursing, College of Medicine, National Taiwan University, Taipei, Taiwan.
¹⁴ Center for Fetal Medicine and Clinical Genetics, Karolinska University Hospital, Stockholm, Sweden.
¹⁵ Department of Clinical Science, Intervention and Technology, Karolinska Institutet, Stockholm, Sweden.
¹⁶ Department of Public Health and Caring Science, Uppsala University, Uppsala, Sweden.
¹⁷ Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
¹⁸ Institute for Public Health Genetics, University of Washington, Seattle, USA.
¹⁹ Ajou Univ. Medical School and Konyang Univ. Graduate school, Yeongtong-gu, Suwon, South Korea.
²⁰ National Rare Diseases Office, Dublin, Ireland.
²¹ University of Medical Sciences of Havana, Havana, Cuba.
²² National University of Malaysia, Kuala Lumpur, Malaysia.
²³ Department of Clinical Genetics Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark.
²⁴ Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.
²⁵ Division of Human Genetics, Faculty of Health Sciences, University of the Witwatersrand & The National Health Laboratory Service, Johannesburg, South Africa.
²⁶ Victorian Clinical Genetics Services, Melbourne, Australia.
²⁷ Clínica Alemana Universidad del Desarrollo, Facultad de Medicina, Centro de Genética y Genómica, Santiago, Chile.
²⁸ Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK.
²⁹ Faculty of Education, University of Cambridge, Cambridge, UK.
³⁰ Department of Psychology, Babeș-Bolyai University, Cluj-Napoca, Romania.
³¹ University of Arkansas for Medical Sciences, Little Rock, AR, USA.
³² Department of Genetics and Stanford Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, CA, USA. kormond@stanford.edu.
³³ Stanford University School of Medicine, 300 Pasteur Drive, MC 5208, Stanford, CA, USA. kormond@stanford.edu.
³⁴ i3S - Instituto de Investigação e Inovação em Saúde, CGPP - Centre for Predictive and Preventive Genetics and IBMC - Institute for Molecular and Cell Biology, Universidade do Porto, Porto, Portugal.
³⁵ Cone Health Cancer Center, Greensboro, NC, USA.
³⁶ The Jackson Laboratory for Genomic Medicine, Farmington, CT, USA.
³⁷ Manchester Centre for Genomic Medicine, Manchester University Hospitals NHS Foundation Trust, Saint Mary's Hospital, Manchester, UK.
³⁸ University of British Columbia, Vancouver, BC, Canada.
³⁹ Departament de Ciències Experimentals i de la Salut, Universitat Pompeu Fabra, Institut Hospital del Mar d'Investigacions Mèdiques, Centro de Investigación Biomédica en Red de Enfermedades Raras, Barcelona, Spain.
⁴⁰ Hadassah Hebrew University Medical Center, Jerusalem, Israel.
⁴¹ Division Human Genetics, University of Cape Town, Cape Town, South Africa.
⁴² Cancer Research, Subang Jaya, Malaysia.
⁴³ University Malaya Medical Centre, Kuala Lumpur, Malaysia.
⁴⁴ Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.

PMID: 30291341
PMCID: PMC6336871
DOI: 10.1038/s41431-018-0252-x

Abstract

The profession of genetic counseling (also called genetic counselling in many countries) began nearly 50 years ago in the United States, and has grown internationally in the past 30 years. While there have been many papers describing the profession of genetic counseling in individual countries or regions, data remains incomplete and has been published in diverse journals with limited access. As a result of the 2016 Transnational Alliance of Genetic Counseling (TAGC) conference in Barcelona, Spain, and the 2017 World Congress of Genetic Counselling in the UK, we endeavor to describe as fully as possible the global state of genetic counseling as a profession. We estimate that in 2018 there are nearly 7000 genetic counselors with the profession established or developing in no less than 28 countries.

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Conflict of interest statement

The authors declare that they have no conflict of interest.

Figures

**Fig. 1**
Map of genetic counselors internationally (2017)

**Fig. 2**
Trained genetic counselors per million population based on country population and estimated number of genetic counselors. (Assumes all trained genetic counselors are practicing clinically, which may significantly overestimate calculations in several countries, particularly the US and Canada where 1/3–1/4 do not regularly see patients. Cuba data is >75/million). Only a handful of countries come close to achieving the workforce recommendation, made by the Royal College of Physicians UK to have 6–12 genetic counselors/million population [48].

See this image and copyright information in PMC

References

1. Heimler A. An oral history of the national society of genetic counselors. J Genet Couns. 1997;6:315–36. doi: 10.1023/A:1025680306348. - DOI - PubMed
1. Cordier C, Lambert D, Voelckel MA, Hosterey-Ugander U, Skirton H. A profile of genetic counsellor and genetic nurse profession in European countries. J Community Genet. 2012;3:19–24. doi: 10.1007/s12687-011-0073-x. - DOI - PMC - PubMed
1. Sahhar M, Hodgson J, Wake SJ. Educating genetic counselors in Australia-developing a masters program. J Genet Couns. 2013;22:897–901. doi: 10.1007/s10897-013-9575-5. - DOI - PubMed
1. Resta R, Biesecker BB, Bennett RL, et al. A new definition of genetic counseling: national society of genetic counselors’ task force report. J Genet Couns. 2006;15:77–83. doi: 10.1007/s10897-005-9014-3. - DOI - PubMed
1. Edwards JG. The transnational alliance for genetic counseling: promoting international communication and collaboration. J Genet Couns. 2013;22:688–89. doi: 10.1007/s10897-013-9621-3. - DOI - PubMed

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The Global State of the Genetic Counseling Profession

Affiliations

The Global State of the Genetic Counseling Profession

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Research Materials

Miscellaneous