Portable legal consent framework for genomic research
Source: Nature editorial
A new consent framework has been launched to encourage individuals to contribute genomic and health data that can be widely accessed and distributed, to boost research.
The Portable Legal Consent for Common Genomics Research (PLC-CGR) is an experimental bioethics protocol that sets out agreed terms for the protection and use of this data by researchers from all sectors. This includes measures to ensure ‘respectful protection for individuals who participate in research’ and ‘equitable access to data by all competing parties’, as well as accessibility of published results.
A new consent framework has been launched to encourage individuals to contribute genomic and health data that can be widely accessed and distributed, to boost research. The Portable Legal Consent for Common Genomics Research (PLC-CGR) is an experimental bioethics protocol that sets out agreed terms for the protection and use of this data by researchers from all sectors. This includes measures to ensure ‘respectful protection for individuals who participate in research’ and ‘equitable access to data by all competing parties’, as well as accessibility of published results.
The PLC-CGR, piloted by Sage Bionetworks and collaborators, is the first tool within the Consent to Research project, which also aims to produce user engagement and data storage and access systems for common genomic research
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