Additional Resources

The ELSI program in the Department of Genetics at the University Medical Center Groningen investigates the ethical, economic, psychological, social, and legal implications of genetic technologies, as well as methods of diagnostics, counselling and screening. The goal of the ELSI program is to explore how genetic technologies can be quickly and responsibly to benefit patients and the public. The program also serves to identify any gaps (e.g. financial or legal) in need of addressing before responsible implementation can take place.

Visit this site to view a comprehensive list of active and inactive Centers of Excellence in ELSI Research (CEER) funded by the NHGRI. CEERs convene multi-disciplinary investigators to address new or persistent ELSI issues and support the next generation of ELSI researchers.

H3ABioNet, a Pan African Bioinformatics Network for the Human Heredity and Health in Africa (H3Africa) consortium, was established to develop bioinformatics capacity in Africa and enable genomics data analysis by H3Africa researchers across the continent. H3ABioNet provides guidelines and resources on the use of clinical data, data management, and data standardization.

This resource includes links to policies, repositories, and guidance for the sharing of results and accomplishments of the activities funded by the National Institutes of Health (NIH) with the research community and the public.

The Data Security Toolkit produced by the Global Alliance for Genomics and Health (GA4GH) offers ready-to-use data security guidelines for genomic data sharing.

The Regulatory & Ethics Toolkit produced by the Global Alliance for Genomics and Health (GA4GH) contains ready-to-use regulatory and ethics guidance for genomic and health-related data sharing including consent, data privacy and security, and copyright policies.

The Genomic Data Toolkit produced by the Global Alliance for Genomics and Health (GA4GH) includes resources to support genomic data sharing such as machine readable consent guidance, a catalogue of available tools for documenting family health history information, a data use ontology, standards for building data repositories, and downloadable APIs.

ICPSR is an international consortium of more than 750 academic institutions and research organizations that provides leadership and training in data access, curation, and methods of analysis for the social science research community. It maintains a data archive of more than 250,000 files of social and behavioral science research data.

The Qualitative Data Repository (QDR) is a dedicated archive for storing and sharing digital data collected via qualitative and multi-method research in the social sciences (with an initial focus on political science). QDR, funded by the National Science Foundation and hosted by the Center for Qualitative and Multi-Method Inquiry at Syracuse University, provides search tools, collects links to U.S. and international data archives, offers support for drafting data management plans, and accepts data deposits.

The CDC Public Health Genomics and Precision Health Knowledge Base (PHGKB) is an online, continuously updated, searchable database of published scientific literature, CDC resources, and other materials curated by CDC staff that address the translation of genomics and precision health discoveries into improved health care and disease prevention.