[HTML][HTML] Towards a data sharing Code of Conduct for international genomic research

BM Knoppers, JR Harris, AM Tassé, I Budin-Ljøsne… - Genome medicine, 2011 - Springer
Data sharing is increasingly regarded as an ethical and scientific imperative that advances
knowledge and thereby respects the contributions of the participants. Because of this and …

[HTML][HTML] A human rights approach to an international code of conduct for genomic and clinical data sharing

BM Knoppers, JR Harris, I Budin-Ljøsne, ES Dove - Human Genetics, 2014 - Springer
Fostering data sharing is a scientific and ethical imperative. Health gains can be achieved
more comprehensively and quickly by combining large, information-rich datasets from …

Genomic data sharing in Europe is stumbling—Could a code of conduct prevent its fall?

F Molnár‐Gábor, JO Korbel - EMBO molecular medicine, 2020 - embopress.org
Genomic data sharing is becoming more important as scientists join forces across borders in
biomedical research for the benefit of patients and society. The EU's General Data …

[HTML][HTML] International Charter of principles for sharing bio-specimens and data

D Mascalzoni, ES Dove, Y Rubinstein… - European Journal of …, 2015 - nature.com
There is a growing international agreement on the need to provide greater access to
research data and bio-specimen collections to optimize their long-term value and exploit …

[HTML][HTML] Developing and implementing an institute-wide data sharing policy

SOM Dyke, TJP Hubbard - Genome medicine, 2011 - Springer
Abstract The Wellcome Trust Sanger Institute has a strong reputation for prepublication data
sharing as a result of its policy of rapid release of genome sequence data and particularly …

[HTML][HTML] Including all voices in international data-sharing governance

J Kaye, SF Terry, E Juengst, S Coy, JR Harris… - Human Genomics, 2018 - Springer
Background Governments, funding bodies, institutions, and publishers have developed a
number of strategies to encourage researchers to facilitate access to datasets. The rationale …

[HTML][HTML] Data sharing in large research consortia: experiences and recommendations from ENGAGE

I Budin-Ljøsne, J Isaeva, B Maria Knoppers… - European Journal of …, 2014 - nature.com
Data sharing is essential for the conduct of cutting-edge research and is increasingly
required by funders concerned with maximising the scientific yield from research data …

[HTML][HTML] International data-sharing norms: from the OECD to the General Data Protection Regulation (GDPR)

M Phillips - Human genetics, 2018 - Springer
The evolution of genomic research and its integration into clinical practice, as they become
international—even global—endeavors, has brought us to a place where scientists and …

[HTML][HTML] Bridging the European data sharing divide in genomic science

F Molnár-Gábor, MJS Beauvais, A Bernier… - Journal of Medical …, 2022 - jmir.org
In this viewpoint, we argue for the importance of creating data spaces for genomic research
that are detached from contexts in which fundamental rights concerns related to surveillance …

[HTML][HTML] Sharing health-related data: a privacy test?

SOM Dyke, ES Dove, BM Knoppers - NPJ genomic medicine, 2016 - nature.com
Greater sharing of potentially sensitive data raises important ethical, legal and social issues
(ELSI), which risk hindering and even preventing useful data sharing if not properly …