The scientific community must do more to include indigenous people in genomics research to ensure that the benefits of this work are shared by all, says Vanessa M. Hayes.
A history of exploitation of indigenous populations in the name of scientific progress — such as unethical nuclear weapons testing in Aboriginal-occupied Australia or the 'biopiracy' of traditional knowledge — has created distrust in scientific research, says Hayes. This means that scientists must address communities' concerns before planning their research.
By including indigenous communities early on in the process they can help local people understand the consequences of participation in genomics research, argues Hayes.
Early involvement can also encourage culturally appropriate discussions about informed consent, and help overcome problems such as inadequate translations of protocols for communities that may communicate primarily through visual language or storytelling.
Their participation must be "full and effective ... ranging from correct data interpretation and acknowledgment in scientific publication, to negotiating potential long-term commercial benefits, to maintaining ties after the research is completed".
She cites her genome sequencing studies of early Southern Africans from Khoesan Namibian communities as an example of successful indigenous participation. The study increased social empowerment by infusing youth with pride about their culture; giving a voice to the communities; and connecting them to local government, the media and human rights leaders.
Science doi:10.1126/science.1205999 (2011)