Genomic Databases, Access Review, and Data Access Committees

Korte inhoud:© 2016 Elsevier Inc. All rights reserved. Sharing results of genomic research through controlled-access databases has gained momentum in recent years. Principles and policies drafted by international and national organizations and funding bodies promulgated data-sharing practices among researchers in order to optimize the use of databases and to strengthen their statistical power. Given the sensitivity of genomic data and broad data uses, protecting the rights of research participants is pivotal in order to ensure ethical data sharing practices. To accomplish this goal, governance mechanisms should be adopted in order to respect the choices of research participants concerning data sharing. This chapter aims to study the role of data access committees of genomic databases in the light of applicable principles and policies. Subsequently, discussions concerning the challenges associated with access review and suggestions for improvements will be offered.

ISBN:0124201962

Jaar van publicatie:2016