Indigenous Inclusion in Sample-based Research
Not only should cultural literacy and respect be prioritized in our daily lives, but both tenets are necessary for quality medical research.
The Children’s Brain Tumor Network (CBTN) joined the Pacific Pediatric Neuro-Oncology Consortium (PNOC) to present a special panel discussion on Indigenous Peoples and Inclusion in Clinical and Genomic Research in April 2022. PNOC and CBTN Investigator Dr. Cassie Kline of the Children’s Hospital of Philadelphia hosted the panel on behalf of the CBTN/PNOC Diversity, Equity, & Inclusion (DEI) working group. Dr. Kline was joined by experts in Indigenous Peoples’ rights, Tribal Engagement, and the complexity of inclusion of Indigenous Peoples in clinical and genomic research across the United States, Canada, and Australia. This discussion focused on navigating Indigenous history as it applies to medical research and featured three distinguished panelists, Chief Lynn Malerba, Professor Alex Brown, and Dr. Nadine Caron.
Chief Malerba is the first female chief of the Mohegan tribe, appointed in 2010. Her experience as a nurse has given her a unique perspective that she brings to her role on the tribal self-governance committee. Professor Alex Brown joined the discussion from Australia, where he has worked to understand Aboriginal struggles with heart disease, diabetes, and cancers. He now serves as the Scientific Director of the Aboriginal Health Grand Challenge at the Telethon Kids Institute. The panel was rounded out with Dr. Nadine Caron, an Ojibiwe surgical oncologist in British Columbia as well as a leader of the First Nations BioBank Initiative and co-leader of the Silent Genomes Project, which seeks to close gaps in diagnosis of genetic diseases in Indigenous children.
Dr. Kline honored the event by opening with a land acknowledgement for the Philadelphia area. “The land upon which we gather is part of the traditional territory of the Lenni-Lenape, called ‘Lenapehoking.” Land acknowledgements serve to recognize the long-standing history and ancestral connection Indigenous Peoples have to an area that has been colonized. Panelists then began their discussion with a look back on historic challenges that have led to a hesitancy for Indigenous Peoples to participate in medical research, and specifically clinical and genomic research. Indigenous Peoples are among the groups of historically under-represented peoples in medical research
Historically, research efforts have been clouded with anti-indigenous sentiment, racism, sexism, and classism, culminating in broad disrespect for Indigenous Peoples. Professor Alex Brown spoke of historical abuse, experimentation, and neglect of Aboriginal communities at the hands of racist medical professionals. Indigenous communities around the world have faced similar experiences. Their communities have been devastated by introduced illnesses and untreated plagues at the hands of those claiming to steward care. These experiences left Indigenous people justifiably hesitant to participate in clinical research activities. To counter this history, Dr. Nadine Caron spoke passionately about the importance of biobanks focused on Indigenous Peoples as a means to best serve the medical needs of their communities. Only through inclusion of these groups can research and understanding be advanced in an advantageous and beneficial approach that addresses the needs of all.
As the discussion moved toward the modern-day relationship between Indigenous Peoples and medical research, Chief Malerba noted the differences between tribal and individual sovereignty and the importance of considering both when designing research. Tribal sovereignty refers to the right of Indigenous Peoples to govern themselves while individual sovereignty is the notion that an individual has the right to make decisions regarding their body. The nature of a collective decision-making model commonly misaligns with non-Indigenous cultures. All of the panelists emphasized the sacred nature of things such as blood, hair, and other biological samples and engagement of tribal leaders to lead discussions and decision-making regarding these revered collections. While designing studies and trials it is imperative to recognize that all pieces of a person, including data, are precious and deserving of protection. This conversation is particularly important as it relates to the work of CBTN and PNOC, both dedicated to the collection of informative biospecimens that translate to better outcomes for patients.
Indigenous researchers like our panelists have a fundamental role in changing the culture and bias of science of the past through inclusion and leadership at the forefront of research. And, it is up to all researchers to ensure an inclusive table with seats for everyone.
Follow the link below to view this panel in its entirety.
https://vimeo.com/701518427