4740.0 - Future Aboriginal and Torres Strait Islander Health Surveys - Have Your Say , 2020  
Latest ISSUE Released at 11:30 AM (CANBERRA TIME) 10/03/2020   
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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:

Cardiovascular DiseaseCholesterol, Triglyceride, HDL, LDL, Apolipoprotein B
DiabetesFasting Plasma Glucose, HbA1c
Kidney DiseaseAlbumin, eGFR, Creatinine
Liver FunctionALT, GGT
NutritionFolate, B12, Sodium, Potassium, Vitamin D, Iodine, Iron
OtherC-reactive protein (CRP)
*See Appendix 5 for details.

Biomedical testing has several benefits including:

  • Improving the health status of people by informing decisions made across the health sector
  • Providing insights into the relationship between biomedical results, behavioural risk factors and rates of chronic disease
  • Helping develop and improve preventative health assessment measures for chronic diseases, e.g. diabetes, cardiovascular disease, kidney disease.
  • Contributing to changes in health policy and clinical practice

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:

      1. How important is it for Aboriginal and Torres Strait Islander people to participate in a voluntary biomedical collection and what barriers are there to their participation?
      2. What do you think are the potential benefits and/or risks to Aboriginal and Torres Strait Islander people from analysis of biomedical tests data?
      3. What ethics, consent and/or governance processes are needed for a biomedical collection to occur in a culturally appropriate way?
      4. Sensitivities people are likely to have with the collection of biomedical samples
      5. What tests should be included? Why?
      6. Should children be included in the collection of samples?
      7. Should sample storage under appropriate governance, be considered to allow for future tests?
      8. Should consent for sample storage allow an option for genomic testing, under appropriate governance?