In this paper we compare university-based research with Indigenous communities in Australia and Pakistan to demonstrate best and worst practises in ethical and engaged research with Indigenous peoples. Engagement with Indigenous communities in research involves not only adherence to university and nationally dictated ethics in human research processes but more importantly engaging with the community in a partnership model. Extractive research practices have created resistance to research engagements by Indigenous peoples worldwide. New community engaged, collaborative and co-created practices are informing a better future for research with Indigenous peoples.
Precision Generation is the future of cancer care, tailored as it is to individuals. To realise its full potential as a method requires broad engagement of oncology patients for whom it is an option across all sectors of society. Indigenous peoples worldwide have been exploited and harmed in research, social, scientific and medical, over the past at least 300 years of modern research. In some countries these unethical and harmful practises continue. Consequently, Indigenous communities have become fearful of research and researchers while at the same time wanting to benefit from transformative research outcomes. Indigenous peoples in general value human relationships that are formed slowly and through formal community-based protocols of reciprocity and respect. Research methods that privilege trust-based relationships between researchers and communities are demonstrated to be successful in engaging Indigenous peoples. Recruitment of Indigenous participants for clinical trials is successful when people are approached by other trusted community members with whom they can easily communicate in language that is familiar and clear. In Australia Aboriginal health workers with lived community experience in building relationships and communicating with Aboriginal communities are key to developing successful and ethical research partnerships.
Our collaborations with researchers conducting clinical trials on precision care will assist communities beyond urban centres to access quality oncological care.