Establishing the First International Genetic Discrimination Observatory

Research output: Contribution to journalJournal articleResearchpeer-review

  • Yann Joly
  • Gratien Dalpe
  • Aisling De Paor
  • Palmira Granados Moreno
  • Edward Dove
  • Ine Van Hoyweghen
  • Chih-hsing Ho
  • Calvin WL Ho
  • Hannah Kim
  • Lingqiao Song
  • Margaret Otlowski
  • Anya Prince
  • Ine van Hoyweghen
  • TH Voigt
  • A Thiraps
  • Maria Pilar
  • Bénédicte BEVIERE BOYER
  • Kato ?
  • Chisato Yamasaki
  • Yvonne Bombard
  • Charles Dupras
Over twenty years after the Universal Declaration on the Human Genome and Human Rights alerted the international community of the need to prevent discriminatory use of genetic information, it still remains a pervasive issue. Legal efforts to address genetic discrimination (GD) solely at the national level are unlikely to resolve a problem that now transcends national frontiers. People should have the opportunity to avail themselves from novel genetic and computational biology technologies without fear of GD. To address the situation, we propose and initiate an international Genetic Discrimination Observatory (GDO) that involves a dynamic virtual network of researchers and stakeholders from over 19 jurisdictions. The GDO will produce information, tools and policy models to help assess and prevent GD. Some of these outputs are already available on the GDO website ( In this paper we outline the reason and describe the basic features of this timely initiative.
Original languageEnglish
JournalNature Genetics
Pages (from-to)466-468
Number of pages3
Publication statusPublished - 23 Mar 2020

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