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Published on: August 16, 2017
[HumGen in Spanish: a comparative description of human genetics regulatory framework in Latin America]
Pablo Francisco Oliva Sánchez1, Jerónimo García-López-De Llano, Jonathan Zaga-Galante
1Departamento de estudios jurídicos, éticos y sociales, Instituto Nacional de Medicina Genómica INMEGEN, México. pfoliva@inmegen.gob.mx
Objective:
To provide a research database of normative documents in Spanish related to human genetics (HG).
Methods:
This is a researchable database, where normative texts are related to HG. The ELSI issues are compiled, combining documents with national, regional, and international influence. The selection of these laws is done through a process of rigorous qualitative research. The portal is aimed at the general public, but with an emphasis on decision makers who possess the capacity to formulate policies on matters related to HG. Several normative documents, issued by international and regional organizations, are included, as well as documents of local government agencies of different countries.
Results:
From the laws and policies available in the database, 39% are decrees of international organizations, 12% are regional normative texts, and 49% are national laws and policies. From all the national legal texts, 48% are laws or policies that belong to Spain.
Conclusions:
Latin American countries are not adopting a futuristic perspective because they do not regulate or legislate the technology resulting from research in HG. The HumGen Portal is a tool that will help the development of regulatory frameworks in Spanish-speaking countries, which will be suitable to current scientific progress.
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