Dianne Nicol
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Distinguished Professor Emerita
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Recent Grants
Grant: Open
Ethical Governance for Clinical and Genomic Data
Open Date: 2023-01-01
Close Date: 2028-12-01
Grant: Close
Developing an Evidence Based Model for Building Trust in Australian Stem Cell Research and Therapies
Open Date: 2021-08-01
Close Date: 2023-12-01
Grant: Close
Global Citizen Deliberation: Analysing a Deliberative Documentary
Open Date: 2020-11-01
Close Date: 2023-12-01
Grant: Close
Genome Editing: Formulating an Australian Community Response
Open Date: 2020-06-01
Close Date: 2022-06-01
Grant: Close
Towards a Trusted Genomic Repository: Tackling Commercialisation Fears
Open Date: 2020-06-01
Close Date: 2023-06-01
Articles (14)
Initiatives that collect and share genomic data to advance health research are widespread and accelerating. Commercial interests in these efforts, while vital, may erode public trust and willingness to provide personal genomic data, upon which these initiatives depend. Understanding public attitudes towards providing genomic data for health research in the context of commercial involvement is critical. A PRISMA-guided search of six online academic databases identified 113 quantitative and qualitative studies using primary data pertaining to public attitudes towards commercial actors in the management, collection, access, and use of biobank and genomic data. The presence of commercial interests yields interrelated public concerns around consent, privacy and data security, trust in science and scientists, benefit sharing, and the ownership and control of health data. Carefully considered regulatory and data governance and access policies are therefore required to maintain public trust and support for genomic health initiatives.
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2024
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Collaborators (16)
Cameron Stewart
Professor
University of Sydney
Nicole Curato
University of Canberra
Mark Taylor
University of Melbourne
Patrick Tam
Professor
University of Sydney
Christopher Rudge
Lecturer
University of Sydney
Josepine Fernow
Uppsala University
Álvaro Mendes
-
Charlotta Ingovldstad Malmgren
Karolinska Institutet
Deborah Mascalzoni
Uppsala University
Katherine Morley
King’s College London
John Dryzek
University of Canberra
James Scheibner
Flinders University
Brad Elphinstone
Swinburne University of Technology
Jerome Atutornu
Senior Lecturer in Diagnostic Radiography
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Torsten Voigt
Professor and Chair of Technology and Diversity Program
RWTH Aachen University
Emilia Niemiec
Lund University
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