(C)ELSI‐us: Reducing Friction with Indigenous Communities in Genomic Research

The importance of culture in framing how Indigenous communities engage with researchers and the context of genetics research does not often get the focus it deserves. Roderick R. McInnes (2011) made an effort to change this by using his 2010 Presidential Address to the American Society of Human Genetics to explore the topic “Culture: The Silent Language Geneticists Must Learn—Genetic Research with Indigenous Populations.” The following quotation from his speech outlines the broader social context in which engagement with Indigenous communities has occurred and its usual outcome: As geneticists and genomicists have reached out to study the world’s populations, particularly indigenous populations, the opportunities for cultural misunderstanding have grown . . . the cultural perspective of the researchers, and their more powerful cultural position in society, has prevented them from fully considering the priorities of the study population, well-intended research could not be undertaken or completed, and the population understudy has been left with a sense of mistrust, stigmatization, or weakened political authority. (McInnes 2011) This pattern has been repeated in many locations around the world, including Aotearoa, New Zealand. The Rakaipaaka Health and Ancestry Study (RHAS) was the only non-disease-specific population genetic research project of its type ever attempted in New Zealand (Ahuriri-Driscollet al. 2008; Hudson et al. 2007). It was a collaboration between the Rakaipaaka Tribal Authority and a Crown Research Institute. But this project was undermined by the controversy prompted by the principal investigator Rod Lea’s attribution of Māori violence to the prominence of the “Warrior gene” among the Rakaipaaka (Merriman and Cameron 2007; Rochford 2012). The project itself, developed and promoted alongside the tribal community, was a study in broken promises: Great hopes are held for the study—not least that it may establish a prototype for how population genetic research projects maybe conducted within indigenous communities in the future. It is hoped that it will provide a case study of the way in which research involving a community may be conducted to directly benefit that community. (Tipene-Matua and Wakefield 2007) RHAS was once a beacon of light and hope—a torch lighting the way for a promising future for genetic and genomic research with indigenous populations and for communities with a common ancestry. But the torch was dropped leaving scorched ear