The Global State of the Genetic Counseling Profession

• Type of Material: Article
• Authors: MaryAnn Abacan, University of the Philippines Manila; Lamia Alsubaie, King Abdullah Specialized Children's Hospital; Kristine Barlow-Stewart, University of Sydney; Beppy Caanen, Maastricht University; Christophe Cordier, SYNLAB Genetics; Eliza Courtney, National Cancer Center; Emeline Davoine, Lausanne University Hospital; Janice Edwards, University of South Carolina; Niby J. Elackatt, Cloudnine Hospitals; Kate Gardiner, LifeLabs Genetics; Yue Guan, Emory University; Lian-Hua Huang, China Medical University; Charlotta Ingvoldstad Malmgren, Karolinska University Hospital; Sahil Kejriwal, University of Washington; Hyon J. Kim, Ajou University; Deborah Lambert, National Rare Diseases Office; Paulina Araceli Lantigua-Cruz, University of Medical Sciences of Havana; Juliana M. H. Lee, National University of Malaysia; Marianne Lodahl, Copenhagen University Hospital; Ashild Lunde, University of Bergen; Shelley Macaulay, University of Witwatersrand; Ivan Macciocca, Victorian Clinical Genetics Services; Sonia Margarit, Clinica Alemana Universidad del Desarrollo; Anna Middleton, Society and Ethics Research; Ramona Moldovan, Babes Bolyai University; Joanne Ngeow, National Cancer Center; Alexandra J. Obregon-Tito, University of Arkansas; Kelly E. Ormond, Stanford University; Milena Paneque, Universidade do Porto; Karen Powell, Cone Health Cancer Center; Kunal Sanghavi, Jackson Laboratory for Genomic Medicine; Diana Scotcher, Manchester University Hospitals; Jenna Scott, University of British Columbia; Clara Serra Juhe, Pompeu Fabra University; Shiri Shkedi-Rafid, Hadassah Hebrew University; Tina-Marie Wessels, University of Cape Town; Sook-Yee Yoon, Cancer Research; Catherine Wicklund, Northwestern University
• Language: English
• Date: 2019-02-01
• Publisher: Springer Nature [academic journals on nature.com]: Hybrid Journals
• Publication Version: Final Published Version
• Copyright Statement: © 2018, The Author(s).
• License: Creative Commons Attribution 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1038/s41431-018-0252-x
• Title of Journal or Parent Work: European Journal of Human Genetics
• ISSN: 1018-4813
• Volume: 27
• Issue: 2
• Start Page: 183
• End Page: 197
• Grant/Funding Information: Publication of this work was supported by Wellcome grant [206194] to Connecting Science, Society and Ethics Research Group and Wellcome Genome Campus, Cambridge UK.
• Keywords: EDUCATION; Life Sciences & Biomedicine; UNITED-KINGDOM; Biochemistry & Molecular Biology; Science & Technology; SERVICES; CANCER; COMPETENCES; Genetics & Heredity; CARE
• Research Categories: Biology, Molecular; Biology, Genetics; Chemistry, Biochemistry

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.