Creating a data resource: what will it take to build a medical information commons?

National and international public–private partnerships, consortia, and government initiatives are underway to collect and share genomic, personal, and healthcare data on a massive scale. Ideally, these efforts will contribute to the creation of a medical information commons (MIC), a comprehensive data resource that is widely available for both research and clinical uses. Stakeholder participation is essential in clarifying goals, deepening understanding of areas of complexity, and addressing long-standing policy concerns such as privacy and security and data ownership. This article describes eight core principles proposed by a diverse group of expert stakeholders to guide the formation of a successful, sustainable MIC. These principles promote formation of an ethically sound, inclusive, participant-centric MIC and provide a framework for advancing the policy response to data-sharing opportunities and challenges

Ethical and practical issues associated with aggregating databases.

David Karp and colleagues discuss the ethical and practical concerns that arise when data are shared in aggregated databases

CRISPR germline engineering: the community speaks

Nature Biotechnology asks selected members of the international community to comment on the ethical issues raised by the prospect of CRISPR-Cas9 engineering of the human germline

The ImmPort System

<p>Investigators participating in major research programs supported by NIAID/DAIT use ImmPort to satisfy NIH data sharing policies. Experimental results, genotypes, and participant phenotypes are stored on secure servers accessible via the Internet. Data can be analyzed by the original investigator within the ImmPort system and can be combined with data from other DAIT-supported investigators for collaborative projects. Reference data from several public sources are integrated within the system and can be a source of comparison with experimental data. The reference data are available to the public, while experimental data are initially visible only to investigators. Ultimately, aggregated experimental data and anonymous research records can be made available to non-DAIT investigators through the mechanisms discussed in the text.</p