Whether collected on journeys around the world, bartered for with tradesmen dealing in wonders, or obtained as a gift, the objects within Renaissance Wunderkammern spanned an extremely wide spectrum—from antique busts to horns that could cure any ailment. Paintings and illustrations of these rooms show off large spaces filled to crowdedness with a plethora of heterogeneous artifacts, rarely repeating, displayed on the walls, floors, and ceilings for others to see. Arbiters of Wunderkammern would keep the collection for the amusement of their private guests. It is an easy and common refrain to compare the modern day museum to these Wunderkammern; after all, the space was a precursor to the museum’s display-case-laden rooms filled with artifacts, often under the auspices of learning about other cultures. I would like to propose, however, that we might find another modern day analogy to the Wunderkammern in one of today’s more controversial startups.

When I was first diagnosed with the genetic collagen disorder, Ehlers-Danlos Syndrome, in 2010, 23andMe had already been collecting and genotyping human samples for three years—though they were doing so at the prohibitively expensive price of $999. The Silicon Valley company, which has received hundreds of millions of dollars in private investment, collects saliva samples from its customers via the mail and uses those samples to genotype each customer’s DNA. For some time, the resulting charts and graphs would include probabilities of being diagnosed with certain diseases (cancer, diabetes, et al.), chances of going bald, certain genetically determined physical traits, and other various facts (ancestry data, for instance).

In late 2013, soon before I became a “spitter”, the U.S. Food and Drug Administration sent a letter to the company prohibiting it from making disease-related predictions, though the administration was rather quick in reversing that decision for 10 disease and condition genetic health reports. These “Health + Ancestry” genome test kits cost $199 and act as a loss leader—the company believes that building as large a database as possible of genomic data will lead to profitability. Indeed, in early 2015, the biopharmaceutical giant, Genentech, paid $60 million for access to the genetic data of those “spitters” who opted-in to have their genome shared (at the time of the deal, that was 600,000 of 800,000 customers).

The true value of 23andMe is not relevant to its spitters.

Reviewing 23andMe’s marketing-speak alongside the technology behind its service highlights two poles on a spectrum: the colorful (literally) excitement of our results acting as the interface to the banality of salvia on a microchip. The data underlying the company’s inspirational rhetoric and seductive data visualizations can be described using Mathew Fuller and Andrew Goffey’s “grayness”, a concept they adapt from Primo Levi’s portrayal of ambiguous internal politics in Nazi Lagers into a way to frame functionally banal technology. In Fuller and Goffey’s 2012 Evil Media, they write of grayness as “a quality that is easily overlooked, and that is what gives it its great attraction, an unremarkableness that can be of inestimable value in background operations” (11).

Downloading and opening my 23andMe “raw data” file, I find 601,885 lines of text. On each line is tab-delimited data: an rsid (unique single nucleotide polymorphism identifiers), a chromosome name (1 thru 23, x, y), a number representing the position of each SNP on my chromosome, and its genotype (a usually two-letter combination of A, G, T, and C). Considering my relatively new classification as an individual with a genetic deficiency, my immediate instinct is to seek out proof of my Ehlers-Danlosian status. I choose one of a handful of genotype references, snpedia.com, and search for Ehlers-Danlos. The resulting page tells me that “EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen, such as mutations in the COL5A or COL3A genes.” 23andMe allows you to search your data by gene through their online “raw data” interface, so I do this. Too many SNPs are listed to go through each one and find where my EDS is; the hints I do find seem too enigmatic to a non-geneticist such as myself.

Delving into their “gray media” concept, Fuller and Goffey are sure to point out that grayness does not indicate media which bears “some sort of hidden meaning that might be brought to light…but a certain recessiveness is often a crucial aspect of their efficacy” (12). The authors highlight this recessiveness as critical to their study and I will do the same here. Gray media is obfuscating: the rows and rows of text—be they genetic data, encrypted hex values, or the lines of code which generate these corpora—are not meant to be read by humans. They are banal in their obtuseness, lulling the brain that tries to read them into giving up. These are, to be sure, defense mechanisms; like the cephalopod’s chromatic camouflage, gray media stays unread as long as it is unreadable.

Why then, do I begin this piece by referencing the Wunderkammern of old? Per Katharine Park and Lorraine Daston,

the copious, various, and costly Wunderkammern contained previous materials, exotica and antiquities, specimens of exquisite workmanship, and natural and artificial oddities—all crammed together in order to dazzle the onlooker

On the surface, it seems that 23andMe’s value lies in the reports it gives you: your health and ancestry data, as presented within the seductive infographic—simple in form and color, integrating iconography with an emphasis on the graphical, rather than the textual, to convey a communicative goal. Certainly, the revelations that I am of Ashkenazi Jewish descent and I have 235 Neanderthan variants were not exactly life-altering. But the company is always updating what it presents, especially now that it and the FDA have agreed upon certain report guidelines.

No, the true value of 23andMe is not relevant to its spitters. That is because it lies in the obfuscatory power of its grey media—the data they share with Genentech or whomever. This is the same value that 17th century princes saw in their Wunderkammern as they invited guests to ogle the rare horns and potions contained within. But rather than pillaging or poaching to collect these artifacts, they charge you (the real “You”, as their marketing would have you believe) to send them this data. And then they charge their partners—the ones with the tools to interpret and take action based on the data—millions for access.

On the flap panel of the 23andMe box, it reads, “Welcome to you.” It is easy to believe that you, the spitter, are being welcomed to see the real “You”. But perhaps, knowingly or otherwise, 23andMe’s copywriter was nodding to who really gets to welcome “You”—the company itself and those with the means to access and understand your raw genetic data.

Works Cited

Daston, Lorraine, and Katharine Park. Wonders and the Order of Nature, 1150-1750. Zone Books, 2001.
Fuller, Matthew, and Andrew Goffey. Evil Media. MIT Press, 2012.

Keep reading

%d bloggers like this: