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Health disparities in the age of personalised medicine?

1 August 2011
By Connie St Louis
Award-winning broadcaster, journalist, academic, writer and scientist
Appeared in BioNews 618
The intersection of racial categories and emerging genetic technology is bound to be vexed given - for example - the long history of eugenics and segregation in the United States. Although the topic has received little attention among the UK general public, pharmaceutical companies on both sides of the Atlantic are investing huge amounts of research and development into individually-tailored drugs - pharmacogenetics.

Most of their work to date has been based on fairly homogeneous subject populations located in wealthy Western urban areas. This research often has not reflected the diversity of national and international human populations. To the extent that subpopulations have been part of these test groups, they have been grouped according to crude metrics like race, self-identification, ethnicity, etc. These groupings continue to perpetuate a misunderstanding that race is, can or should be a proxy for biology.

A report in the Center for American Progress (CAP)'s magazine Science Progress revisits some of the tensions in addressing race - a malleable social construct - and genetics, which is often cast as proxy for ironclad destiny and determinism. It explores the trends and challenges at the intersection of society and chemistry - in cultural, historical, and - most pressingly - in market terms.

This report 'Addressing Race and Genetics' should be read while keeping in mind that CAP is an American lobbying group and that many venture capitalists and biopharmaceutical companies are pushing to create and exploit consumer-driven markets that promise designer genetic intervention. Unfortunately, much of what is styled as 'individual' is - in fact - premised on carelessly broad categorisation. It uses the socio-historical and cultural language of race, not the language of biology.

The immediate difficulty reading this report, particularly from an international perspective, is broad familial and migratory patterns of genetic evolution do not necessarily conform to United States-specific racial categories. For a quick example, terms like 'black', 'African-American' or 'white' have no constant or coherent meaning at the allelic level.

Phenotypical features like darker skin colour might be better referenced as proxies for broad equatorial descent - whether Andean indigenous, Bangladeshi or sub-Saharan. Carelessly conflating provincial social category with genomic code inevitably leads to wrong-headed medical outcomes and re-inscribing ancient cultural prejudices.

The report urges care about conflating social categories with genetic code when it says: 'But studies should not overuse race as a proxy for assessing disease risk at the expense of gathering other biological or diagnostic information that could be just as relevant, if not more so'.

Yet, despite this, it seems to leave the door open to the 'possibility' that racial differences are dandy proxies after all. Take, for example, the statement: 'A person of Asian or African descent may possess similar traits or suffer from the same disease as a European but it might be caused by a different gene variant or another non-genetic cause altogether simply because the gene variant that causes it in Europeans is less prevalent in Asian or African populations'.

The report's political tentativeness and guarded tone is perhaps due to the Centre for American Progress's lobbying activities. Perhaps it reflects an almost neurotic need for deference in the name of 'diplomacy' in American political debates. But this deference ultimately confuses and ultimately neuters the report's message.

Addressing Race and Genetics: Health Disparities in the Age of Personalized Medicine
Center for American Progress |  13 June 2011
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11 April 2011 - by Dr Jess Buxton 
This evening debate, organised by the Progress Educational Trust (PET) in partnership with University College London's Genetics Institute, and supported by the Wellcome Trust, marked the launch of PET's project 'Genes, Ancestry and Racial Identity: Does it Matter Where Your Genes Come From?' The first of what promises to be a very lively series of debates...
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