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  1. 1

    Mark Lock

    Thanks, Kalinda Griffiths. A lot of useful information and links. Good to see the principle of data sovereignty noted in your article. However, it is not explicitly noted in the National Aboriginal and Torres Strait Islander Cancer Framework or the Cancer Australia Reconciliation Action Plan or the Cancer Australia Annual Report (2016-2017).

    In the Cancer Framework, the definition of ‘cultural safety’ is incorrectly attributed to the Royal Australian College of General Practitioners when it should be Williams R. Cultural Safety – What Does It Mean for Our Work Practice? Australian and New Zealand journal of public health. 1999;23(2):213-214,, which is the source for the RACGP.

    A final question – are there Indigenous members of the Cancer Australia Advisory Council, or in the Cancer Australia Executive, or employees of Cancer Australia? And I can not see the ToR or Membership details of the National Leadership Group on Aboriginal and Torres Strait Islander Cancer Control (not noted in the annual report).

    Thanks! Mark

  2. 2

    Kalinda Griffiths

    Thanks for your questions Mark. They are very good points to raise.
    The National Aboriginal and Torres Strait Islander Cancer Framework has a focus on cancer control initiatives. Its conception and development were led by Aboriginal and Torres Strait Islander people which engaged broad national consultation with Aboriginal and Torres Strait Islander people affected by cancer, cancer services, relevant government agencies and research groups. The discussion on Indigenous data sovereignty post-dates these consultations and the respective publication, with the first international publication on data sovereignty with an Australian Indigenous focus being released in 2016 (Kukutai & Taylor, 2016). It is important that any government or institutionally driven cancer control initiative that involves cancer surveillance also includes the discussion of data sovereignty today. Indeed, discussing the principles of Indigenous data sovereignty and how to embed those principles in governance, is required across all agencies and institutes that collect and utilise data pertaining to Indigenous people.

    While some of the author team are consulted by Cancer Australia, we are not formally associated with the Government institution. We therefore cannot speak to the development or the implementation of Cancer Australia Reconciliation Action Plan, nor the Cancer Australia Annual Report. Additionally, in response to your last point we are not aware of the Cancer Australia executive processes regarding the involvement of Aboriginal and Torres Strait Islander people. I would recommend contacting Cancer Australia to discuss further (

    We would like to note that the steps forward in the development of Aboriginal and Torres Strait Islander cancer control in Australia have come a long way in the past fifteen years. There is a long history of Aboriginal and Torres Strait Islander led partnerships to discuss ways forward in Indigenous cancer control. In 2003, the first review into cancer and Aboriginal and Torres Strait Islander people was released, which highlighted the paucity of research and reporting (Condon, Armstrong, Barnes, Cunningham, 2003). The Cancer Council Australia convened the first ever round table on Aboriginal and Torres Strait Islander cancer in 2004. The first National Roundtable on Priorities for Aboriginal and Torres Strait Islander Cancer Research conference occurred in 2010 through a partnership between the Lowitja Institute and the Queensland Institute of Medical Research. It brought together leading experts, Aboriginal and Torres Strait Islander cancer survivors and community members, and representatives from Aboriginal and Torres Strait Islander controlled organisations with an aim to develop national research priorities for better outcomes for Aboriginal and Torres Strait Islander people, their families and communities.
    I hope this response covers all of your queries adequately. Please don’t hesitate to email me if you’d like to discuss further:

    Condon, JR., Armstrong, B., Barnes, T., Cunningham, J. 2003. Cancer in Indigenous Australians: a review. Cancer Causes Control. 14:109-121.
    Kukutai, T., & Yaylor, J. (Eds). 2016. Indigenous Data Sovereignty: Towards an Agenda. CAEPR Research Monograph No. 38. ANU Press and Centre for Aboriginal Economic Policy Research. DOI:


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