Imagine this scenario: you're a healthy person, no major complaints. You go for your annual physical exam, and you have a couple of blood tests--standard stuff, checking to make sure your cholesterol's ok, you're not anemic, etc. A couple of weeks go by, you get a card in the mail that says everything's fine. End of story, right?
Maybe not.
Now imagine that the hospital or clinic has retained the blood left over from the tests your dcotor ordered. And further imagine that the hospital or clinic has what's called a biobank or biorepository--that is, a collection of stored tissue for use in research. Your DNA is extracted from the blood sample and sequenced--which means that some piece of your genotype is now known to some researcher (but not to you). In some institutions, this couldn't happen without your explicit (written) informed consent; but in others, it's standard practice that "waste tissue" from blood tests, pathology samples, etc. becomes the property of the hospital or clinic. Should informed consent be required, or is an opt-out model more appropriate?
Generally speaking, biobank participants' DNA samples aren't associated with their name, Social Security Number, street address, or other information traditionally considered "identifying"--but the reality is, nothing is a more precise identifier of who you are than your so-called genetic fingerprint. Is this worrisome?
I'd be interested to hear what others think about this--and, fair warning, I am likely to be asking more questions along these lines, as the DNA biobanking issue is on my mind a lot these days!
While I'm at it, here are two references for further reading, if you are so inclined. The Stored Tissue Issue, from Robert Weir, Robert Olick, and Jeffrey Murray, is an academic treatment of the issues. Michael Crichton's Next is an entertaining look at some of these questions--and it just happens to be a WBP Book Club selection.
3 comments:
Heh - Next was an interesting book, although I think I preferred Prey. But mostly because Next was a bit too much like reading a textbook for previous classes, and I kept jumping ahead. "Yep, now we're gonna go all John Moore - oh, look! He mentions it, hah." ...it's not as much fun to read when you're a step ahead of most of the story. ;-)
But speaking of John Moore, that's always what comes to mind when I hear about biobanking, and because of that (and the legal rulings around it), I never quite believe that there is no way to connect the dots, for the systems that say they retain no identifying features (aside from your DNA). There's simply too much potential money bound up there for me to believe that they would have absolutely no way to go back to the source, if really necessary.
Where Next was interesting was in the final legal analysis the book gave the John Moore case (and their fictional furthering of it); unfortunately, I can see that being an all too real trial in the not too distant future. (And I'll leave it at that for those who intend to read the book but have not, yet.)
In the case of genetic material, the value is obviously in the variations between individuals. However, given that by default we are all so similar, it seems like the only actual and logical option is to not allow anyone to own genetic material - unfortunately, it's a little too late for that.
I think the point raised above is valid: How can we own something that is common to everyone.
But, the issue that is really of concern is: "How can you not own something that is truly unique in you. If I can protect my unique thoughts via copyrights, or ideas via patents, why can I not own and protect my own biological being?
Is there really such a thing as a unique biological being, though? Certainly we are each unique individuals, the sum of our parts... but that seems to me the same as saying that chocolate chip cookies are each individual in that the amount of ingredients each contains will vary, but they are the same in that they are all the same ingredients.
What makes me me, and not my sister, is not my combination of genetic material, but my combination of experience. And except for the very rare individual with a truly unique mutation of their genetic code, I don't know that anyone is truly genetically unique.
For example, falling back to an example used in Next - if someone has a valuable genetic combination in their blood, and a company (or even origin individual) takes pains to copyright, patent, or otherwise protect it... is their child with the same genetic combination violating that protection? Their sibling? Parent? Uncle? Whomever else has inherited that combination?
Perhaps at heart the heart of this is determining precisely how we identify what it means to be an individual, what it means to be unique, and how we protect the genetic integrity of the person while still allowing the genetic research of the corporation.
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