EU Data Sharing Restrictions Spark Global Concerns, NIH Urged to Lead Collaboration
The European Alliance for Personalized Medicine and Science Europe have raised concerns about the EU's data sharing restrictions. Meanwhile, the U.S. National Institutes of Health (NIH) and National Human Genome Research Institute (NHGRI) are urged to prioritize data sharing plans in their funding decisions.
A 2014 survey revealed that many researchers did not prioritize data sharing plans in their reviews and few penalized non-compliance. The EU's proposed General Data Protection Regulation imposes restrictions on data sharing, unlike Genome Canada's policy, which encourages open access.
The NIH implemented the Genomic Data Sharing Policy in 2014 to improve data sharing. This policy requires applicants to submit a data sharing plan and deposit non-human data upon publication, and human data upon acceptance. However, international collaboration is hindered by traditional decentralized silo storage of genomic data. The NIH is encouraged to lead the way in creating an international, serious, and collaborative genomic data sharing infrastructure, and to urge international partners to adopt broad data sharing policies for global adoption.
The EU's data sharing restrictions have sparked concerns among organizations. The NIH and NHGRI should ensure grant reviewers take data sharing plans seriously. The NIH's Genomic Data Sharing Policy, along with Genome Canada's liberal policy, can serve as models for international collaboration. However, international partners must adopt similar policies to ensure global adoption.
