Foundation of the International Federation of Human Genetics Societies: The Catalyst

Research output: Chapter in Book/Report/Conference proceedingChapter in a book

1 Citation (Scopus)


The International Federation of Human Genetic Societies was founded in 1996 by a group of American and European geneticists, who had become increasingly dissatisfied with the International Congress of Human Genetics, the only worldwide forum for geneticists at that time. The Congress, founded in 1956, was run by a self-styled “Permanent Committee”, regarded by many as dysfunctional. In collaboration with the World Health Organization, two of the Permanent Committee co-authored a highly controversial set of guidelines on ethics and service provision, which Professor Marcus Pembrey used to catalyse the rapid instigation of the International Federation. This aspect of the Federation’s foundation was unlikely to have come to light had it not been revealed during a brief interview with Professor Pembrey.
Original languageEnglish
Title of host publicationHistory of Human Genetics
Subtitle of host publicationAspects of Its Development and Global Perspectives
EditorsHeike Petermann, Peter Harper, Susanne Doetz
PublisherSpringer, Cham
Number of pages9
ISBN (Electronic)9783319517834
ISBN (Print)9783319517827
Publication statusPublished - 11 May 2017


  • Oral history
  • Human genetics
  • International Federation of Human Genetics Societies
  • International Congress of Human Genetics


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