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Establishing the First International Genetic Discrimination Observatory

Joly, Yann ; Dalpe, Gratien ; Minssen, Timo LU ; Ó Cathaoir, Katharina ; De Paor, Aisling ; Granados Moreno, Palmira ; Dove, Edward ; van Hoyweghen, Ine ; Ho, Chih-hsing and Ho, Calvin WL , et al. (2020) In Nature Genetics 52. p.466-468
Abstract
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... (More)
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 (https://gdo.global/en/gdo-description). In this paper we outline the reason and describe the basic features of this timely initiative. (Less)
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publishing date
type
Contribution to journal
publication status
published
subject
keywords
Medical law, Medicinsk rätt
in
Nature Genetics
volume
52
pages
3 pages
publisher
Nature Publishing Group
external identifiers
  • scopus:85083378955
  • pmid:32203466
ISSN
1061-4036
DOI
10.1038/s41588-020-0606-5
language
English
LU publication?
no
id
0b1bd098-bf7d-4432-a317-d68efeb8cdca
date added to LUP
2020-12-16 13:17:42
date last changed
2022-04-26 22:36:55
@article{0b1bd098-bf7d-4432-a317-d68efeb8cdca,
  abstract     = {{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 (https://gdo.global/en/gdo-description). In this paper we outline the reason and describe the basic features of this timely initiative.}},
  author       = {{Joly, Yann and Dalpe, Gratien and Minssen, Timo and Ó Cathaoir, Katharina and De Paor, Aisling and Granados Moreno, Palmira and Dove, Edward and van Hoyweghen, Ine and Ho, Chih-hsing and Ho, Calvin WL and Kim, Hannah and Song, Lingqiao and Otlowski, Margaret and Prince, Anya and Voigt, TH and Thiraps, A and Pilar, Maria and BEVIERE BOYER, Bénédicte and Yamasaki, Chisato and Bombard, Yvonne and Dupras, Charles}},
  issn         = {{1061-4036}},
  keywords     = {{Medical law; Medicinsk rätt}},
  language     = {{eng}},
  month        = {{03}},
  pages        = {{466--468}},
  publisher    = {{Nature Publishing Group}},
  series       = {{Nature Genetics}},
  title        = {{Establishing the First International Genetic Discrimination Observatory}},
  url          = {{http://dx.doi.org/10.1038/s41588-020-0606-5}},
  doi          = {{10.1038/s41588-020-0606-5}},
  volume       = {{52}},
  year         = {{2020}},
}