Genomic and related health data access review
Data access committees (DAC) play critical gatekeeping roles that ensure sensitive genomic data involving humans are used only by authorized users with appropriate permissions and for ethically approved purposes. Current strategies for reviewing data access requests vary considerably across DACs and heavily rely on manual verification. These currently existing strategies are incompatible with the shift towards cloud-based data environments and are inadequate to meet growing demand for dynamic, real-time, and automated access decisions. This NIH funded project will support the development of operational standards for DACs at the NIH and internationally, as well as build technical capacities in implementing automated workflows that help to improve the quality and efficiency of data access review for large, publicly funded genomic data repositories.
AstroEthics
Exploration of the ethical, legal and social issues associated with human experimentation in extra-terrestrial environments
Ethical, legal and social implications of emerging genetic technologies
Rare genetic diseases often present in the earliest stages of life, substantiating an ethical and scientific imperative to study how emerging genetic technologies can be leveraged to improve the health of children.
Global Alliance Regulatory and Ethics Work Stream.
Data access committees (DAC) represent one institutional safeguard charged with applying rules that ensure an ethically permissible balance between data protection and utility in research. The Regulatory and Ethics Work Stream (REWS), in association with Data Use and Research Identities Work Stream (DURI), propose to develop procedural standards for data access committees that facilitate consistency, effectiveness, and robustness of reviews for data access requests to genomic and health-related data.
Ethics review mutual recognition for multi-country submissions in resource-limited settings
The final report summarizing the findings of a project on ethics review mutual recognition in a pandemic context is now available. Ethics review mutual recognition refers to a system where the decisions of one Research Ethics Committee (REC) are accepted by another, based on shared procedural standards. The project, conducted in collaboration with the COVID-19 Clinical Research Coalition’s Ethics Working Group and funded by WHO, examined the challenges and opportunities of ethics review mutual recognition for multi-site COVID-19 research protocols.