The Genetic Discrimination Observatory: Confronting Novel Issues in Genetic Discrimination

Yann Joly, Katherine Huerne, Mykhailo Arych, Yvonne Bombard, Edward Dove, Palmira Granados Moreno, Chih-hsing Ho, Ine Van Hoyweghen, Hannah Kim, Audrey Lebret, Timo Minssen, Katharina Ó Cathaoir, Anya Prince, Margret Otlowski, Michael S Pepper, Rob Sladek, Lingqiao Song, Torsten Voight, Ma’n H Zawati, Gratien Dalpe

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Abstract

Genetic discrimination can be defined as the differential, negative, treatment or unfair profiling of an individual based on presumed or actual genetic characteristics or on omics data. In the face of rapidly developing omics and data-driven technologies, coordinated actions need to be undertaken by stakeholders to document and address adverse consequences of technical advances and the genetic revolution. This article aims to inform the community about an international organization developed to address genetic discrimination, the Genetic Discrimination Observatory (GDO), and developments that have occurred since its international launch in late 2020. These developments indicate that genetic discrimination can take many forms and happen in multiple contexts in today’s rapidly evolving scientific and social environment. The need for an international organisation such as the GDO to inform the community and respond to these developments becomes crucial in this context.
Original languageEnglish
JournalTrends in Genetics
Volume37
Issue number11
Pages (from-to)951-954
ISSN0168-9525
DOIs
Publication statusPublished - 6 Sep 2021

Keywords

  • Faculty of Law
  • genetics
  • regulation
  • discrimination
  • law
  • human rights
  • access
  • justice
  • fairness

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