A few days ago, deCODEme graced my inbox with yet another message, letting me know that their website had been updated. Among these updates were some “breast cancer gene” variants and a sweet video. Some excerpts: 

“So this gives you an opportunity to empower the individual, in the case of deCODEme, to be able to do something to better their lives.”

“A really important thing about modern medicine now is we need to empower people, and we believe that knowledge is power — the more knowledge you have about your situation, the more likely you are to make a good decision.”

The “new” rhetoric reminds me eerily of Foucault’s notion of bio-power, a group of techniques designed to ’subjugate bodies and control populations.’ (140) Normally, I would let Wikipedia elaborate here on bio-power, but it was brought to my attention that I might be too dismissive, or even a little negative regarding deCODEme. Wikipedia’s definition would certainly force me to do this. So, to grossly oversimplify what Foucault means by bio-power and to leave room for the affirmative: sovereign power shifts from a “power over death,” to a “power over life” — where sovereignty rested in the legitimate control to decide when its subjects live, it now legitimately controls how its subjects live. [A much more in-depth discussion of this can be found here.]  My truncated definition of bio-power allows room for different species, or alternative normativities, of this “power over life” to co-habituate, in tension, with one another.

This is particularly relevant to deCODEme since they don’t explicate what would “better their [patient's] lives” or what entails “a good decision.” Those are left up to the spectral social forces of bio-power — and this may be a good thing. By being vague and evasive, deCODEme not only tries to avoid legal trouble, but also tries to avoid being a single normative force in the minds of their customers. Therefore, in order to take a more complex stance about this update, I’m going to discuss a particular facet of bio-power which exemplifies a resistance from, rather than acceptance or complacency with, normalizing forces of biotechnology, and allows for multiple conceptions of both “normal” and “healthy.” However, this type of affirmative stance isn’t something that one can just “take,” it needs to be actively and constantly developed – in other words, “brought to life.”

Let me begin by talking about one of my absolute favorite articles on genetics, by Karen-Sue Taussig, Rayna Rapp, and Deborah Heath: Flexible Eugenics.

In the contemporary United States, LPA [Little People of America] members act within a society marked by a long-standing attachment to ideologies of individualism and free choice, which are increasingly imbricated with the intensified commodification and market orientation of the recent neoliberal era. … There is a convergence, or constitutive tension, between genetic normalization and an individualism that increasingly engages biotechnology — biotechnological individualism. From this tension, what we call flexible eugenics arises: long-standing biases against atypical bodies meet both the perils and the possibilities that spring from genetic technologies. (60)

Taussig et al. perform an ethnography of the role that genetic testing plays in the LPA community. They discuss at length one type of dwarfism, achondroplasia, which is caused (~98% of the time) by a heritable and “easily testable” dominant mutation in a growth hormone receptor gene. One copy of this gene results in achondroplasia, and two copies unfortunately results in death.

For the LPA, the “normal body” can be seen as a short-statured one (not a tall-statured one as elsewhere), so a genetic test result showing a singly dominant form of achondroplasia might be irrelevant to a decision to keep the fetus since it falls within the ideal of a normal (read: healthy) body, for that community. This is in comparison to a tall-statured community, where singly-dominant achondroplasia might be abnormal and thus undesired. These two definitions of normality co-existing, through biotechnological individualism, causes the force of bio-power to partially sublate and score itself, producing a tension that allows for multiple, sometimes contradictory ideas of “normal.”

In my next post, I’ll continue to elaborate on these kinds of normative tensions in bio-power, and discuss the biotechnological individualism that deCODEme is seeming to endorse…