Wednesday, July 24, 2013

Your Siblings (and parents and children and...), Your Self; or a little "informed" consent goes a long, long way

I'm catching up on some older issues of Science, and I found this article:
Agency Nixes deCODE's New Data-Mining Plan

There's a lot in this interesting piece about how Iceland's Data Protection Authority is seeking to protect the privacy interests of citizens of Iceland and how deCode Corporation is arguing that the agency is over-reaching.

What struck me as worthy of note is that a little "informed" consent goes a long, long way. Put bluntly, if your close relative agrees to participate in a study involving genetics and it is known that you are a close relative, then your close relative has agreed to disclose information about your DNA.  The company would like to "impute genotypes for ... living and dead relatives."  The company documents refer to "in silico genotypes," that are determined not on the basis of tissue samples, but rather via computational means (using silicon chips).

Don't get me wrong: deCode seeks to improve the human condition (and, appropriately, their bottom line) by doing basic and applied science that leads to improved outcomes for human diseases that have a genetic component.  For example, deCode recently presented results of Alzheimer's research at a conference:
Jonsson and his team of researchers scoured the nursing home database in Iceland. "We identified several coding variants in the Amyloid Precursor Protein. We imputed these variants into the genomes of patients with Alzheimer's disease and control participants and then tested [them] for an association with Alzheimer's disease," he reported.
"To our knowledge, A673T represents the first example of a sequence variant conferring strong protection against Alzheimer's disease," Jonsson said. The researchers estimated that the mutation results in an approximately 40% reduction in the formation of amyloidogenic peptides in vitro (Medpage article).
I am glad that deCode is trying to find a cure for Alzheimers!

Further, I am not raising a critical point about control of information flows just because DNA and computers are involved. Some imputations about genetic factors can be made the old fashioned way, with simple observations of hereditable traits.

And here is a related point: It's not just research that involves DNA that has a potential effect on uninformed, unconsenting people closely connected to informed, consenting subjects.  Consider the informed consent of social science research.  To what extent do the responses of our subjects incidentally disclose information about others who were never asked if they wanted to be part of our investigations?

Our approach to protecting human subjects through the mechanism of the informed consent assumes that an autonomous individual is the subject.  Yet individuals are embodied and embodiment entails hereditable material (and other information) that is shared.  I cannot be fully individual because my body comprises, in part, information (that hereditable material) that I share with close relatives.  I cannot be fully autonomous when my close relatives are able to choose what to do with information about their bodies, because their disclosures necessarily disclose probable information about me. (And vice versa.)

In short, the autonomous individual is a myth, and social institutions and policies that depend on that myth are problematic.

(Insert citations to the feminist literature on this here.)