What question did this study set out to answer?

To establish a harmonized international framework of principles guiding the responsible, effective, and ethical sharing of human genomic and clinical data for biomedical research.

September 30, 2014The HUGO JournalOpen Access

Framework for responsible sharing of genomic and health-related data

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Authors

BKBartha Maria KnoppersMcGill University Health Centre

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Implication

Policy framework demonstrates principles for responsible genomic and health data exchange across global research consortia, highlighting a human-rights approach to biomedical collaboration.

Key Points

To establish a harmonized international framework of principles guiding the responsible, effective, and ethical sharing of human genomic and clinical data for biomedical research.
Convened under the auspices of the Global Alliance for Genomics and Health (GA4GH) to unite regulators, funders, patient groups, technologists, industry, publishers, and research consortia.
Grounds policy development in international human rights instruments, specifically Article 27 of the 1948 Universal Declaration of Human Rights and complementary national laws.
Articulates a balanced standard that upholds the public right to share in scientific advancement while protecting the moral and material interests of scientific authors.
Establishes foundational operational principles for cross-border data transfer rooted in privacy, non-discrimination, procedural fairness, and respect for human dignity.

Cite This Study

Bartha Maria Knoppers (2014) studied this question.

synapsesocial.com/papers/6a0eec5a2eca052da647ebf9 https://doi.org/10.1186/s11568-014-0003-1

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Implication

Policy framework demonstrates principles for responsible genomic and health data exchange across global research consortia, highlighting a human-rights approach to biomedical collaboration.

Framework for responsible sharing of genomic and health-related data

Discussion

Member takes

Implication

Key Points

Cite This Study

Framework for responsible sharing of genomic and health-related data

Discussion

Member takes

Implication

Key Points

Cite This Study

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