Mapping a route to Indigenous engagement in cancer genomic research
Mapping a route to Indigenous engagement in cancer genomic research
Precision oncology guided by genomic research has an increasingly important role in the care of people with cancer. However, substantial inequities remain in cancer outcomes of Indigenous peoples, including Indigenous Māori in Aotearoa New Zealand. These inequities will be perpetuated unless deliberate steps are taken to include Indigenous peoples in all parts of cancer research-as research participants, in research leadership, and in research governance. This approach is especially important when there have been historical breaches of trust that have discouraged their participation in health research. This Personal View describes a precision oncology research roadmap for neuroendocrine tumor research, which seeks to reflect the values of New Zealand's Indigenous Māori people. This roadmap includes facilitating ongoing dialogue, Māori leadership, reciprocity, agreed kawa (guiding principles), tikanga (cultural protocols), and honest monitoring of what is and what is not being achieved. We challenge cancer researchers worldwide to generate locally appropriate roadmaps that honestly assess their practices to benefit Indigenous people internationally.
Introduction
Introduction
Large-scale genomic studies of multiple cancer types (e.g., the International Cancer Genome Consortium) have transformed our scientific understanding of cancer and have facilitated precision oncology in which clinical care is guided by individualized genomic information about each patient's cancer. Precision oncology includes sequencing genes in individual tumors, along with minimally invasive diagnostic methods such as circulating-DNA liquid biopsies. Precision oncology has met major challenges; however, clinicians have high expectations for its use, and the approach is beginning to change clinical practice. The effect of precision oncology has reached some Indigenous peoples, including Māori whānau (families) with cancer. An example in Aotearoa New Zealand is the discovery of specific germline mutations in CDH1, a tumor-suppressor gene that encodes cadherin-1, among Māori whānau with hereditary gastric cancer. The discovery not only provided a better understanding of this cancer, but also resulted in the development of new diagnostics to identify high-risk patients who can now consider surgery as a treatment option. This research was designed with ongoing consultation and input from the whānau. However, this example is uncommon and most research is not done in this way, which leads to a risk that any potential benefit might be reduced for Indigenous peoples. This Personal View describes the development of a precision oncology research roadmap for a New Zealand cancer research programme, which has been guided by the values of Indigenous people (New Zealand Māori). The roadmap includes monitoring of what is and what is not being achieved, and aims to prevent perpetuation of health inequities and to ensure that potential benefits gained from its research reach all of New Zealand. We challenge cancer researchers, internationally, to honestly assess their practices and their benefits to Indigenous peoples.