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Extending the CARE Principles from tribal research policies to benefit sharing in genomic research [PDF]
Frontiers in Genetics, 2022 Indigenous Peoples have historically been targets of extractive research that has led to little to no benefit. In genomics, such research not only exposes communities to harms and risks of misuse, but also deprives such communities of potential benefits.
Stephanie Russo Carroll +14 more
doaj +2 more sources
Principles of care for acquired hemophilia [PDF]
European Journal of Haematology, 2021 AbstractObjectiveTo establish clear priorities for the care of patients with acquired hemophilia A (AHA) by proposing 10 key principles of practical, holistic AHA management.MethodThese principles were developed by the Zürich Haemophilia Forum, an expert panel of European hemophilia specialists comprising physicians and nursing and laboratory ...
Gerry Dolan +2 more
exaly +5 more sources
PRIMARY IMMUNE DEFICIENCIES – PRINCIPLES OF CARE [PDF]
Frontiers in Immunology, 2014 Primary Immune Deficiencies (PIDs) are a growing group of over 230 different disorders caused by ineffective, absent or an increasing number of gain of function mutations in immune components (mainly cells and proteins).
Helen eChapel +7 more
doaj +8 more sources
Statement of Principles for Health Care Journalists [PDF]
PLoS Medicine, 2005 Many journalism organizations have published codes of ethics in recent years. The Association of Newspaper Editors, for example, lists 47 different codes on its website. But an organization of health care journalists felt that none of those codes addressed the unique challenges of covering complex health care topics.
Schwitzer Gary
doaj +5 more sources
Values and Principles of Integrated Care
International Journal of Integrated Care, 2016 This is the first editorial of the International Journal of Integrated Care to be published by our new open-access publisher, Ubiquity Press. It follows a successful 15-year period supported by Igitur at the University Library Utrecht where IJIC was the ...
M.M.N. Minkman
doaj +5 more sources
European principles of haemophilia care [PDF]
Haemophilia, 2008 Summary. As the management of haemophilia is complex, it is essential that those with the disorder should have ready access to a range of services provided by a multidisciplinary team of specialists. This document sets out the principles of comprehensive haemophilia care in Europe.
B T Colvin, K Fischer, A Gringeri
exaly +3 more sources
The CARE Principles for Indigenous Data Governance
Data Science Journal, 2020 Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting Indigenous rights and interests in Indigenous data (including traditional ...
Stephanie Russo Carroll +13 more
doaj +5 more sources
Opening Research Data: What Does It Mean for Social Sciences?
M@n@gement, 2022 Recent international trends demonstrate multilevel efforts to ‘open’ science across its whole ecosystem and lifecycle – from capturing research data through to publishing results.
Héloïse Berkowitz, Hélène Delacour
doaj +1 more source
Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty
Frontiers in Research Metrics and Analytics, 2023 Indigenous Peoples' right to sovereignty forms the foundation for advocacy and actions toward greater Indigenous self-determination and control across a range of domains that impact Indigenous Peoples' communities and cultures.
Maui Hudson +20 more
doaj +1 more source
CARE Principles for Indigenous Data Governance
o-bib. Das offene Bibliotheksjournal, 2022 Die CARE-Prinzipien fordern dazu auf, im Umgang mit Forschungsdaten ethische Fragestellungen, Machtdynamiken und historische Kontexte zu reflektieren und systematisch zu berücksichtigen. Sie lassen sich damit als komplementär zu den Grundsätzen der FAIR-
Sabine Imeri, Michaela Rizzolli
doaj +1 more source