Researchers

Guidance for Human Genome Data Collection, Access, Use and Sharing

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 joined global leaders in the consultation for this important document. You can download the document here.

Indigenous Cultural and Intellectual Property (ICIP)

Most people are familiar with the concept of intellectual property. However, when undertaking research with Aboriginal and Torres Strait Islander people, you must be aware of their intellectual property rights with regards to cultural heritage.

ICIP rights are stepped out in the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) which Australia became a signatory to in 2009.

In Australia, this is referred to as ‘Indigenous Cultural and Intellectual Property’, or “ICIP”. It includes both the intangible and tangible aspects of cultural heritage.

There are many other forms of ICIP, you should be aware of these before you start planning your research.

Please refer to the resources below to better understanding ICIP, and your responsibilities as a researcher.

CSIRO – Indigenous Cultural and Intellectual Property Principles

Indigenous Health Genomics – The Legal, Ethical and Social Issues

UNDRIP

Art Law Society of Australia – Indigenous Cultural and Intellectual Property (ICIP)

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, pleas

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 which sets out a number of recommendation to inform the development of new approaches to engage participants in clinical research. Read the paper here.