Explore our curated collection of resources including top publication outlets for ELSI scholars, Centers of Excellence in ELSI Research, ELSI databases and research centers, genome research consortia, statutes and legislation related to genomics, and bioethics resources.

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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.

  • H3ABioNet
  • H3Africa
  • consortium. bioinformatics
  • Africa
  • genomics data analysis
  • clinical data guidelines
  • data management
  • 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.

  • NIH
  • NIH policy
  • data sharing
  • genomic data
  • data resources
  • data standards

The Sulston Project, headed by co-principal investigators Robert Cook-Deegan, M.D., and Amy McGuire, J.D., Ph.D., aims to examine the challenges associated with developing a knowledge commons to support the interpretation of inherited, cancer-associated, genomic variants and develop policies to address disincentives for data sharing and implementation challenges.

  • inherited cancer-risk variants
  • policy solutions
  • data contributors
  • data generators
  • Data Sources
  • data facilitators
  • professional data users
  • Robert Cook-Deegan
  • Amy McGuire

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.

  • GA4GH
  • policy-framing
  • genomic data
  • Human Rights
  • genomic data sharing
  • data security
  • data security toolkit

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.

  • GA4GH
  • policy-framing
  • genomic data
  • Human Rights
  • genomic data sharing
  • Ethics
  • ethics toolkit

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.

  • GA4GH
  • policy-framing
  • genomic data
  • Human Rights
  • genomic data sharing
  • genetic data toolkit

This NIH Guide Notice, announced on 12/2019, is in effect for applications submitted on or after 1/25/2021 and applies to new research projects deriving genomic data from human sources, such as specimens and cell lines.

  • NHGRI
  • NIH
  • genomic data sharing
  • data sharing policy
  • research projects

This FAQ, provided by NHGRI, offers further information on the NHGRI implementation of the NIH Genomic Data Sharing Policy.

  • NHGRI
  • NIH
  • genomic data sharing
  • data sharing policy
  • research projects