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The Global State of the Genetic Counseling Profession

Abacan M 1 , Alsubaie L 2 , Barlow-Stewart K 3 , Caanen B 4 , Cordier C 5 , Courtney E 6 Show all authors , Davoine E 7 , Edwards J 8 , Elackatt NJ 9 , Gardiner K 10 , Guan Y 11 , Huang LH 12 , Malmgren CI 13 , Kejriwal S 14 , Kim HJ 15 , Lambert D 16 , Lantigua-Cruz PA 17 , Lee JMH 18 , Lodahl M 19 , Lunde Å 20 , Macaulay S 21 , Macciocca I 22 , Margarit S 23 , Middleton A 24 , Moldovan R 25 , Ngeow J 6 , Obregon-Tito AJ 26 , Ormond KE 27 , Paneque M 28 , Powell K 29 , Sanghavi K 30 , Scotcher D 31 , Scott J 32 , Juhé CS 33 , Shkedi-Rafid S 34 , Wessels TM 35 , Yoon SY 36 , Wicklund C 37

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 Center for Fetal Medicine and Clinical Genetics, Karolinska University Hospital, Stockholm, Sweden
  • 14 Institute for Public Health Genetics, University of Washington, Seattle, USA
  • 15 Ajou Univ. Medical School and Konyang Univ. Graduate school, Yeongtong-gu, Suwon, South Korea
  • 16 National Rare Diseases Office, Dublin, Ireland
  • 17 University of Medical Sciences of Havana, Havana, Cuba
  • 18 National University of Malaysia, Kuala Lumpur, Malaysia
  • 19 Department of Clinical Genetics Rigshospitalet, Copenhagen University Hospital, Copenhagen, Denmark
  • 20 Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway
  • 21 Division of Human Genetics, Faculty of Health Sciences, University of the Witwatersrand & The National Health Laboratory Service, Johannesburg, South Africa
  • 22 Victorian Clinical Genetics Services, Melbourne, Australia
  • 23 Clínica Alemana Universidad del Desarrollo, Facultad de Medicina, Centro de Genética y Genómica, Santiago, Chile
  • 24 Society and Ethics Research, Connecting Science, Wellcome Genome Campus, Cambridge, UK
  • 25 Department of Psychology, Babeș-Bolyai University, Cluj-Napoca, Romania
  • 26 University of Arkansas for Medical Sciences, Little Rock, AR, USA
  • 27 Department of Genetics and Stanford Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, CA, USA. kormond@stanford.edu
  • 28 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
  • 29 Cone Health Cancer Center, Greensboro, NC, USA
  • 30 The Jackson Laboratory for Genomic Medicine, Farmington, CT, USA
  • 31 Manchester Centre for Genomic Medicine, Manchester University Hospitals NHS Foundation Trust, Saint Mary's Hospital, Manchester, UK
  • 32 University of British Columbia, Vancouver, BC, Canada
  • 33 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
  • 34 Hadassah Hebrew University Medical Center, Jerusalem, Israel
  • 35 Division Human Genetics, University of Cape Town, Cape Town, South Africa
  • 36 Cancer Research, Subang Jaya, Malaysia
  • 37 Feinberg School of Medicine, Northwestern University, Chicago, IL, USA
Eur J Hum Genet, 2019 Feb;27(2):183-197.
PMID: 30291341 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.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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