Contentious communities: the Human Genome Diversity Project

1. Contentious communities: the Human Genome Diversity Project HI269 Week 23

2. Comparisons to keep in mind • Anthropometry  • Statistics 

3. Hmmmm.Anthropometry and statistics…So what was gained from these tools of identification and generalization?And who were the winners and losers?

4. Popular ‘Race’ & post-genomic ‘population’: What’s the difference? According to the population geneticists: • ‘The man in the street’ defines race by simple physical traits which in fact hide genetic complexity • Genomics, by contrast, uses molecular differences between ‘populations’ which are invisible, but which track close to the DNA, to reveal genuine similarities and differences between human groups

5. So what was the ‘Human Genetic Diversity Project’? • Remember: geneticists (especially the proponents of the HGP) believed that the HGP would produce medicine’s next ‘big leap forward’, like anatomy and germ theory had done in the past. They feared that unsampled groups might either be ‘left out’ of the advances, or that rare genes present among those populations (whether beneficial or pathological) might be lost from view.

6. So what was the ‘Human Genetic Diversity Project’? • They also felt that human history (or at least the secrets of human evolution) resided particularly in the genomes of small isolated populations – which were rapidly disappearing as the rest of humankind pressed in on them. “The populations that can tell us most about our evolutionary past are those that have been isolated for some time, are likely to be linguistically and culturally distinct and are often surrounded by geographic barriers......Such isolated populations are being rapidly merged with their neighbours, however, destroying irrevocably the information needed to reconstruct our evolutionary history......It would be tragically ironic if, during the same decade that biological tools for understanding our species were created, major opportunities for applying them were squandered.” Luca Cavalli-Sforza et al, Genomics, 1991

7. So what, then, was the ‘Human Genetic Diversity Project’? • Initially it was an attempt to ‘map’ or ‘sequence’ the entire genetic complements of key small ‘ethnic’ populations, also initially called ‘isolates of historic interest’ or IHIs. • In response to political and ethical concerns, it added various service roles (e.g.: to bring medical supplies and services to sampled populations; to offer educational opportunities; to engage sampled populations in the formulation of research questions and methodologies) and extended its efforts to ‘all human populations’.

8. Grounds for objection: biomedical/scientific • Within any population studied, 85% of all human genetic diversity will be represented. In other words, the difference within any group is significantly greater than the difference between groups • Historic evidence suggests that even currently isolated groups have not always been so over the course of the last 500 years, and thus that the sought-for ‘purity’ cannot be assumed based on current circumtances.

9. Grounds for objection: ethical • Physical samples must be collected only with ‘informed consent’; but the information they will reveal is not only about the individual donor, but about an entire population. So from whom must consent be sought? • And how will ‘informed consent’ address possible commercial exploitation (e.g. in new genopharmaceuticals)? Who will benefit from such ‘bio-piracy’/bioprospecting? • What if the new information gathered disrupts groups’ origin myths and /or can be used to disprove their land claims?

10. 'After being subjected to ethnocide and genocide for 500 years, which is why we are endangered, the alternative is for our DNA to be stored and collected....why don't they address the causes of our being endangered, instead of spending $20 million for five years to collect and store us in cold laboratories? If this money will be used instead to provide us basic social services and promote our rights as Indigenous Peoples, then our biodiversity will be protected.' Victoria Tauli-Corpuz, Cordillera People's Alliance, Philippines