Power and Consent: Technologies of inclusion in global health genomics
Séance du séminaire Anthropologie et santé mondiale
Invitée : Duana Fullwiley, Stanford University, USA
Large-scale genomic databases that provide DNA and tissues from many different global populations increasingly provide valuable sources of medical, pharmaceutical and forensic information. The resultant products, discoveries and raw materials hold the promise for numerous innovations. These possibilities, in turn, raise issues of who profits from DNA databases and on what scale? How will benefits be shared, and do individuals, families and populations truly understand what can be done with DNA in the genomic age? Lastly, how has genomics shifted ideas and practices around global public health? Scientists the world over understand that African populations are highly desired in genomic research because of the vast amount of genetic diversity among and between African peoples. The Human Health and Heredity Project (H3Africa) has begun efforts to develop big data genomic research on the continent in several sites on a wide range of ailments and issues that are seen as “local” and affecting Africans. The project was initiated with goals of representing and including Africans in the genomic revolution. It was also launched to develop African genomics, to train African scientists, and to “capacity build” so that DNA samples remain in Africa, rather than being shipped to the US, or Europe. Yet human medical genomics relies on people to trust in and participate in science. How does this happen in a postcolonial setting where examples of resource extraction abound? How are everyday patients and citizens invited to join such efforts, and what forms of education and informed consent are ethically required of such research in Africa, and elsewhere? This paper will delve into one example of science education, representation, and informed consent that tries to tackle these issues—an Afro-Futuristic comic book called Genome Adventures that was funded by H3Africa.