Should you test your genes?

CNN asks the question: "Should you test your genes?"  But I think it should be treated as two separate issues:

1. Do you have the right to know your genes (i.e. the specific gene variants you possess)?
2. Who is allowed to make claims on gene function?

Certainly, it's everyone's right to know their own genes.  That's what the Human Genome Project was all about, and several individuals like James Watson and Glenn Close have had their own genomes fully sequenced for $100,000 or more. Personal genetics services (like 23andMe) offer an affordable service for the rest of us, by sampling a much smaller amount of genetic differences between individuals.

Yet this individual right to know is being challenged for the following reason: Vendors who provide gene tests are also making claims on the results, e.g. you may have a 1% increased risk of cancer because of the genes you inherited.  For this reason, the FDA is blocking all personal genetic testing.

This decision clearly infringes on an individual's right to know our own genes, which are objective facts about us (our unique and individual fingerprint, responsible for human diversity).  Rich people like Glenn Close are allowed to know their gene sequence, but not the rest of us?

Thomas Goetz, who is just as outraged as I am, writes: "The controversy here rests on a single assumption: That the typical ... American isn't prepared to learn about their DNA ... We can't handle the truth."

Yet there is a solution: Don't treat them as gene "tests".  Separate the identification of gene variants (objective facts about you) from the claims being made on them.  Perhaps partition these activities, so no single entity or private company can do both.  Once you know your gene sequence, you can do your own research on what your individual gene variants really mean, in a grand marketplace of ideas.

But don't take away our right to know our own genes, under the guise of consumer protection.

Comments

[neil_mac]

Interesting piece, I totally agree with "so no single entity or private company can do both". I've just been researching on the subject after a friend has his dna tested, and it's still something that scares me slightly. We started a forum on the subject and it would be great to chat if you fancied taking the discussion further, on what form you think the future of genetic testing should take!