Recently here on this blog, we discussed the issue of the growing racial divide in personalized medicine – and how it has the potential to leave non-whites behind as we move into a promising new age in medicine.
Since then, on a positive note, 23andMe has launched an initiative, called Roots Into the Future, giving away their service for free to 10,000 self-identified African-Americans. It’s a step in the right direction. Though with over 100,000 people already in their database, that’s still only 10% of their total. Of course there are already African-Americans in their customer base, but the fact that they feel the need to offer this initiative is indicative of the industry-wide divide and the general need for more diverse DNA in the study pool.
This week, the Washington Post published an article that adds yet another wrinkle. Federal patent examiners at the US Patent and Trademark office have been rejecting patents for molecular diagnostics (a mainstay of personalized medicine) that have not been validated across a variety of racial and ethnic groups. This is controversial partly because the ideas of “race” and “ethnicity” are not hard genetic concepts – a better breakdown would be along the lines of haplogroups, but even here we have the sticky problem of ancestry admixture and cultural identification. For instance, Latinos, a very large and diverse group, can come from a range of admixed ancestries, spanning Europe, Africa and native American haplogroups. The label “Latino” is not in and of itself particularly meaningful or specific enough when it comes to genetic markers. While the USPTO’s intentions are good (to make sure we don’t think that tests derived from genetic information heavily skewed to one population are necessarily valid for everyone) there is clearly more work to be done before we can claim to judge these tests fairly. And on the flipside, we’re going to need more initiatives like 23andMe’s to make sure the database we’re working from isn’t skewed in the first place.
It is important to note too that getting non-whites to participate in DNA testing is not always as simple as it sounds, especially outside of the developed world. The US Government’s use of DNA spying in the Osama Bin Laden case and some famously bungled efforts to work with the DNA of native populations have sown mistrust and bad blood that will be difficult to clear. But if we’re to bring the promise of personalized therapy to everyone, we will need to find ways to move past these differences and establish ethical guidelines that strike a balance between being open for constructive science while being respectful of heritage and tradition. We'll also need to get the regulators up to speed on what does and doesn't constitute race and ethnicity in a genomic world.