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

doi:10.1016/j.tig.2021.08.004

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

Research output: Contribution to journal › Journal article › Research › peer-review

11 Citations (Scopus)

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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 language	English
Journal	Trends in Genetics
Volume	37
Issue number	11
Pages (from-to)	951-954
ISSN	0168-9525
DOIs	https://doi.org/10.1016/j.tig.2021.08.004
Publication status	Published - 6 Sep 2021

Keywords

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

Access to Document

10.1016/j.tig.2021.08.004

FulltextAccepted author manuscript, 662 KBLicence: CC BY-NC-ND

Cite this

Joly, Y., Huerne, K., Arych, M., Bombard, Y., Dove, E., Granados Moreno, P., Ho, C., Van Hoyweghen, I., Kim, H., Lebret, A., Minssen, T., Ó Cathaoir, K., Prince, A., Otlowski, M., Pepper, M. S., Sladek, R., Song, L., Voight, T., Zawati, M. H., & Dalpe, G. (2021). The Genetic Discrimination Observatory: Confronting Novel Issues in Genetic Discrimination. Trends in Genetics, 37(11), 951-954. https://doi.org/10.1016/j.tig.2021.08.004

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

In: Trends in Genetics, Vol. 37, No. 11, 06.09.2021, p. 951-954.

Research output: Contribution to journal › Journal article › Research › peer-review

Joly, Y, Huerne, K, Arych, M, Bombard, Y, Dove, E, Granados Moreno, P, Ho, C, Van Hoyweghen, I, Kim, H, Lebret, A , Minssen, T , Ó Cathaoir, K, Prince, A, Otlowski, M, Pepper, MS, Sladek, R, Song, L, Voight, T, Zawati, MH & Dalpe, G 2021, 'The Genetic Discrimination Observatory: Confronting Novel Issues in Genetic Discrimination', Trends in Genetics, vol. 37, no. 11, pp. 951-954. https://doi.org/10.1016/j.tig.2021.08.004

Joly, Yann ; Huerne, Katherine ; Arych, Mykhailo ; Bombard, Yvonne ; Dove, Edward ; Granados Moreno, Palmira ; Ho, Chih-hsing ; Van Hoyweghen, Ine ; Kim, Hannah ; Lebret, Audrey ; Minssen, Timo ; Ó Cathaoir, Katharina ; Prince, Anya ; Otlowski, Margret ; Pepper, Michael S ; Sladek, Rob ; Song, Lingqiao ; Voight, Torsten ; Zawati, Ma’n H ; Dalpe, Gratien . / The Genetic Discrimination Observatory: Confronting Novel Issues in Genetic Discrimination. In: Trends in Genetics. 2021 ; Vol. 37, No. 11. pp. 951-954.

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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{\textquoteright}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.",

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AB - 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.

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