Establishing the First International Genetic Discrimination Observatory
Research output: Contribution to journal › Journal article › Research › peer-review
- JOLYetal2020_Establishing the First International Genetic Discrimination Observatory_(accepted_version)
Accepted author manuscript, 367 KB, PDF document
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.
|Number of pages||3|
|Publication status||Published - 23 Mar 2020|