The World Health Organization has recently released “Guidance for human genomic data collection, access, use and sharing”, which outlines globally relevant principles to guide everyone involved with genomic data. Professor Alex Brown - link will open in a new window joined global leaders in the consultation for this important document. You can download the document here.
Towards Meaningful Connections with Participants: Assessing two-way engagement strategies in clinical research.
ALIGN VIC Node member, Matilda Haas, and Rosie Brown, have authored a white paper with CT:IQ - link will open in a new window which sets out a number of recommendation to inform the development of new approaches to engage participants in clinical research. Read the paper here - link will open in a new window.
Guidelines for Community Involvement in Genomic Research
Involve Australian and Australian Genomics have partnered with patient support and advocacy groups, patients and carers, people who involve community in their research, interested members of the public, genomic researchers and healthcare professionals to develop community involvement guidelines for genomic researchers. For further details and to download the document, please see the Australian Genomics website - link will open in a new window.
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