Abstract
Preamble The sharing of genomic and health-related data for biomedical research is of key importance in ensuring continued progress in our understanding of human health and wellbeing. The challenges raised by international, collaborative research require a principled but nevertheless practical Framework that brings together regulators, funders, patient groups, information technologists, industry, publishers, and research consortia to share principles about data exchange. Such a Framework will facilitate responsible research conduct. This Framework is developed under the auspices of the Global Alliance for Genomics and Health. Its mission is to accelerate progress in human health by helping to establish a common Framework of harmonized approaches to enable effective and responsible sharing of genomic and clinical data and to catalyze data sharing projects that drive and demonstrate the value of data sharing. This Framework provides guidance for the responsible sharing of human genomic and health-related data, including personal health data and other types of data that may have predictive power in relation to health. In particular, it highlights, and is guided by, Article 27 of the 1948 Universal Declaration of Human Rights. Article 27 guarantees the rights of every individual in the world “to share in scientific advancement and its benefits” (including to freely engage in responsible scientific inquiry), and at the same time “to the protection of the moral and material interests resulting from any scientific...production of which [a person] is the author”. (As set out in Appendix 1, many other international conventions and national laws, regulations, codes and policies also guide responsible data sharing behavior). This Framework is guided by the human rights of privacy, non-discrimination and procedural fairness. At the same time, it considers all human rights principles relevant, complementary and interrelated, founded as they are on respect for human dignity. Since science proceeds only
Highlights
Preamble The sharing of genomic and health-related data for biomedical research is of key importance in ensuring continued progress in our understanding of human health and wellbeing
The challenges raised by international, collaborative research require a principled but practical Framework that brings together regulators, funders, patient groups, information technologists, industry, publishers, and research consortia to share principles about data exchange
Since science proceeds only with the broad support of society, respect for all persons is a primary driver underlying all other derived principles. This Framework establishes a set of foundational principles for responsible research conduct and oversight of research data systems in the realm of genomic and health-related data sharing
Summary
Preamble The sharing of genomic and health-related data for biomedical research is of key importance in ensuring continued progress in our understanding of human health and wellbeing. In addition to being founded on the right of all citizens in all countries to the benefits of the advancements of science, and on the right of attribution of scientists, it reinforces the right of scientific freedom The value of this Framework is that it: offers political and legal dimensions that reach beyond the moral appeals of bioethics and provides a more robust governance framework for genomic and health-related data sharing; speaks to groups and institutions, not just individuals; stresses the progressive realization of duties; and urges action by governments, industry, funders, publishers, and researchers to create an international environment for responsibly sharing data. Recognizing diversity of legal and ethical approaches and being responsive to emerging issues, both this Framework and its Policies are intended to provide leadership in this domain for wider discussion
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