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Voluntary biomedical testing will be included in the National Health Measures component of the IHMHS. Biomedical testing involves taking small samples of blood, urine or saliva to test for things like diabetes, cholesterol levels, kidney disease, and nutrient levels such as iron, folate and Vitamins B12 and D. All samples will be disposed of at the end of the survey by the pathology company undertaking the testing, but participants may be able to choose to have their samples stored under secure and culturally appropriate governance arrangements for additional testing and research. Participants will be provided with the information to ensure they know what they are consenting to and what tests will be undertaken.
Biomedical testing was part of the 2012-13 AHS’ NATSIHS and NATSINPAS survey components and was undertaken with ethics approvals from numerous ethics committees. Results from the tests were returned to the participant and with consent, to their doctor and/or medical clinic. Those with high risk levels, along with their clinician, were contacted directly by the pathologist to initiate necessary care. The collection in 2012-13 was only undertaken with adults in an attempt to build trust with the Aboriginal and Torres Strait Islander community before potentially extending the opportunity to children. The possible inclusion of children for the upcoming biomedical collection is part of the conversation we are seeking to have with Aboriginal and Torres Strait Islander communities.
The tests conducted in the 2012-13 NATSIHS* included:
Biomedical testing has several benefits including:
In addition to the biomedical tests and potential storage of samples, the ABS is also seeking input on whether to consider including an option for genomic testing on stored samples, subject to stringent ethical and governance requirements. In some of our discussions to date, support has been voiced from Aboriginal and Torres Strait Islander peoples that they be offered the opportunity to be involved in genetic research as they can see there are potential benefits for their community. In 2011, at a Lowitja Institute Roundtable on genetic research, Professor Emma Kowal noted, “Genetic research can provide insight into why some people from the same family respond differently to treatments; why some people are resistant to disease and others susceptible to the same disease, even when they might live in identical environments; and can provide clues about how diseases develop.” Kowal E, and Anderson I. Genetic Research in Aboriginal and Torres Strait Islander Communities: Continuing the Conversation, The Lowitja Institute, 2012
We acknowledge there are some concerns around the potential misuse of genomic testing due in part to historical misrepresentation and the feeling across the community that genomic testing has never worked in favour of Aboriginal and Torres Strait Islander peoples. As part of the consent process for people choosing to participate in the biomedical collection, the ABS will need to clearly communicate how the samples will be used, stored, accessed and disposed. To inform this we are seeking your input to help us understand how to respectfully incorporate Aboriginal and Torres Strait Islander peoples’ cultural beliefs into the communication and consent process.
In your response to this paper, the ABS is seeking your input on the following biomedical test items:
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