DeliriousMe: Ownership and Identity in An Age of Genomic Medicine
by Patricia J. Williams
Published in LOG: Journal of Architecture and Urbanism, Volume 25, Summer, 2012
Sometimes it’s hard to count on the sustained attention of university students, distracted as they are by an excessively twittering cyber-world. Every now and then we, their professors, have to toss up something extreme to make them snap to. In my bioethics class, for example, I announce that I’m going to hire a forensic team to come in and do a sweep of the whole classroom with little sterile sensors that will gather samples of hair, hangnails and whatever DNA may be extracted from their discarded coffee cups. Then I’m going to spin the whole in a big centrifuge, and, with sufficient time and investment, I shall not only manufacture the first Flawlessly Above Average Columbia Law Student, but…. I shall patent the same. And thenceforth they will not be able to reproduce without paying me royalties.
It’s a far-fetched scenario, yes, but the question of who owns our bodies–in particular the genomic information that may be culled from routine human shedding—is a matter of evolving legal importance. Gene sequences in genetically modified plants are already owned and traded on a global scale. In the United States, the case of Association for Molecular Pathology v. Myriad Genetics recently challenged the attempt to patent human genetic sequences related to breast and ovarian cancer. And if the 2012 Supreme Court case of Mayo v. Prometheus has made clear that processes occurring naturally may not be patented, it remains entirely unclear what will be deemed either “natural” or, for that matter, a “process.”
Beyond the technological questions involved in unlocking the secrets of the human genome, there are emotional ties to our detached but component parts, as well as those proprietary stakes. When Alistair Cooke, host of Masterpiece Theater, died in 2004, his cancer-ridden body was stolen and sold for medical-grade bone grafting; most of us will feel that the crime involved is not just about the property of the body, but is also a violation of the body’s…sanctity for lack of a better term. When, in 2011, a teenager in China sold one of his kidneys so he could purchase a new iPad, it attracted international media attention for its extraordinary mining of the body for purely pecuniary purposes.
One of the weirder cases exploring this bioethical territory involved South Carolinian John Wood, whose leg was amputated after an airplane crash in 2004. Wanting to be buried “whole” eventually, he had the leg embalmed and placed it in a storage unit with other belongings. But he fell behind on the rental fees, and the contents of the unit were sold to one Shannon Whisnant, who found the leg carefully wrapped and nestled inside a BBQ smoker. Whisnant called the police, who traced it back to Wood. Wood insisted the leg be returned given his sincere belief that, detached or not, it was part of him. Whisnant, however, claimed that he was the purchaser-for-value, and that he hoped to put the leg on display and charge a hefty price for the viewing. “Halloween’s just around the corner,” he explained.
The ghoulishness of this scenario should not obscure the legal issues at stake: should a commodity interest in the contents of the storage unit trump the sacrosanctity of corporeal integrity? Are discarded body parts “alienable” in a free-market sense? Or do they fall in the realm of what we deem constitutionally “inalienable”?
What about DNA? Suppose we assumed that Wood’s genetic makeup included cells that were resistant to some rare disease. Do Wood or Whisnant have any proprietary claim to profits to be derived from the extraction, culture and sale of those cells? Could Whisnant not only display the leg but also publish Woods’ entire genome as part of his Halloween art show? Could the police officer to whom Whisnant brought the leg do a DNA test, retain the sample, patent a method of assaying the extracted data, and ultimately market a pharmaceutical byproduct to patients at $5000 a dose? We all leave trails of our cells wherever we go—under what circumstances should that material be regarded as discarded and thus open for exploitation by finders-as-keepers?
On May 30, 2012, the personal genetics company 23andMe announced that it had procured its first patent, for “Polymorphisms Associated With Parkinson’s Disease.” Patents create exclusionary rights in knowledge; they prohibit non-patent-holders from using that knowledge without permission or the payment of royalties. 23andMe’s patent stems from massive aggregations of data culled from customers who’ve paid considerable money for information about their genetic predispositions for various health risks. While 23andMe’s consumer contract says that no “research” on submitted spit samples shall be done without consent, many customers seem not to have realized that it goes on to define “research” as “academic”—which is to say work published in “peer-reviewed scientific journals.” The contract then distinguishes “research” from “research and development (R&D)” of commercial products—for which no consent is needed.
When announcing news of the patent, CEO Anne Wojcicki declared that she wants “discoveries to move from the realm of academic publishing to the world of impacting lives by preventing, treating or curing disease.” But it is precisely in academic publishing where new ideas are most apt to be freely shared and tested; Wojcicki seemingly wants to dislocate discoveries “from” academia “to” the gated community of patent law–simultaneously designating patent law as the exclusive geography of disease prevention, treatment and cure. As she explains, “Often the only way a company will even think about pursuing a drug lead is if they have assurance that they can recoup their investment.”
Wojcicki frequently expresses her desire to heal, and to broadly share the knowledge gained through data mining. Readers may know that Wojcicki is married to Google co-founder Sergey Brin, whose family history of Parkinson’s disease places him at risk. But that back story, compelling as it may be, is not reflected in the business model either of them pursue—nor should anyone expect it to be. As with any for-profit corporate head, their fiduciary duty is to make money. The realization of any wider or public interest in health care will not come from the private corporate sphere by itself. The patent system, as well as our corporatized system of R&D, assure that data-aggregating businesses’ real wealth will come not from analyzing individual spit samples, but from the far greater asset of bundling customers’ genetic, lifestyle, and family history for commercial exploitation.
The reality of that exploitation must be bourne in mind by those who so easily send off DNA samples to be analyzed for either medical risk or ancestry tracking. Over the last few years, “spit parties” have become quite popular as a kind of party game, and as a purported teaching aid in high school and college science classes, touted as both fun and educational. But we should be much more thoughtful about the ends for which our bodies are being mined. The redemptive thrill of being co-creators of some medical miracle must be measured against the possibility that we are rendering fungible that which most profoundly distinguishes us and….enabling a commodity exchange in which important aspects of our identities will be sold to the highest bidder.
Recently I attended a science-and-democracy themed conference entitled “Deleterious Me: Whole Genome Sequencing, 23andMe, and the Crowd-Sourced Health Care Revolution” at which Anne Wojcicki was the featured speaker. The poster for the conference, which depicted the double helix as a spiral staircase with little Lego-like people climbing upwards, ever upwards, toward a darkly gloaming heaven served as a very effective metaphor for the concerns I have about this entire industry. I worry that “DNA” is too often figured in the popular imagination as an inevitably uplifting stairway to heaven, an infallible path to higher truth. This leads to a credulous suspension of both ethics and caution.
In addition, the peculiar locution of Wojcicki’s title, “Deleterious Me,” posits the intimacy of “me” as inherently self-destructive. It’s an odd but effective recasting of mortality as auto-immunity. One’s essence is framed as noxious, diseased, decaying. Health and health care, by contrast, are positioned on the other side of the colon, located squarely in the geography of crowd-as-source. If the individual is framed as dangerous, lonely, self-annihilating, its rescue lies in the comfort of crowds, safety in numbers, collective shelter from the HarmfulMe.
There is power in this conjoined set of idealized genetic references: a poignant longing for embodied self-perfection, yet the fear and loathing of assured self-betrayal. There’s something very nearly Shakespearean about the tension: tremulously human, mythically themed, with just a hint of hovering tragedy. Indeed, the urgencies of our technological revolution beg for philosophizing or negotiation on some theatrical public stage—some Faustian oratorio where narrative and necromancy meet for a solemn duet.
In the 21st century, however, our greatest passion plays are exploited in the realm of private contract rather than public good or participatory democracy, rising to general consciousness only at the level of commercials aired at half-time. So it is that privately-held companies like 23andMe can own, store and resell—to anyone–the most elemental biological markers of individual identity while marketing themselves as “direct-to-consumer” purveyors of “personal” self-knowledge.
This is more insidious than it might sound initially. Using 23andMe as an example (and as the largest such company in the United States), it’s instructive to look at what the enterprise promises in its advertisements, versus what it actually provides. On its website (as of May 21, 2012), the company invites you to order a DNA Spit Kit, the analysis of which will “start your journey” into a world of “endless possibilities.” The results will “help you explore” the past (“Discover your global origins, trace your ancestry, and find living relatives”); learn about your present (“Access over 200 online health and traits reports, including carrier status, drug response and disease risk”); and participate in the future (“Be part of the new genetic discoveries that can benefit us all”).
But the Terms of Service—that is, the contractual provisions to which customers actually agree—are so vague that it is unclear whether the company is really agreeing to provide any more grounded information than what one might find in a horoscope or a really slimy Ouija board. What is clear, however, is that the company is not really making the bulk of its profit from analyzing spit samples, but rather from the sale and exploitation of data gathered from the collective spittoon. Worse, there are serious breaches of privacy and broad potentialities for surveillance.
This is hardly a new ethical challenge. When Rebecca Skloot’s book, “The Immortal Life of Henrietta Lacks,” hit the best-seller list some years ago, there was a brief flash of heightened public awareness of the phenomenon of “bioprospecting.” Ms. Lacks was a poor black woman who suffered from a uniquely aggressive form of cervical cancer, to which she succumbed in 1951. Her cancer was rare enough that she became an object of medical study; some of her cervical cells were taken, cultured in a petri dish, and distributed widely for research purposes. It was the first so-called “immortal” human cell line and it has been the foundation for literally billions of dollars’ worth of medical and pharmaceutical discovery. Neither Lacks nor her family was informed of the removal of those cells, or the profit derived therefrom. When Skloot located Lacks’ children and grandchildren, she found a family still poor and without health care. Skloot’s exemplary response was to set up the Henrietta Lacks Foundation, a non-profit that provides emergency health care and medical scholarships to those in need. (Donations may be made by visiting www.henriettalacksfoundation.org.) Ms. Lacks’ legacy points to the crux of the problem: if a person’s biological material can be bought and sold and patented should not the profits therefrom be shared—at least to some degree–with the person in question, or perhaps pooled as a kind insurance for common health and welfare?
What of the privacy issues implicated in the buying and selling of intimate genetic data? 23andMe promises to “anonymize” genetic data, and to destroy saliva samples upon request. It helps to know, however, that destroying the actual samples does not mean that the computerized map of information extracted from that sample will be destroyed. Even where a customer attempts to eliminate an account altogether, “[o]ur contracted genotyping laboratory may…retain your Genetic Information as required by local law and we may retain backup copies for a limited period of time pursuant to our data protection policies.” What constitutes a “limited period of time” is not defined.
In addition, where 23andMe enters into commercial arrangements, it discloses enough information to “enable partners to provide our Service to their customers and/or to provide you access to their products and services. We will not provide any individual-level Personal Information to these commercial partners without your explicit consent. 23andMe may include your Genetic and/or Self-Reported Information in Aggregated Genetic and Self-Reported Information disclosed to these commercial partners even if you have not given consent for your data to be used in 23andWe Research.”
Notice that there is a distinction made between “individual-level Personal Information” (defined as name, email, address, user ID and password, payment information, etc.) and aggregated “Genetic and/or Self-Reported Information.” Genetic information means your genotype: the specific chemical map or sequence of your DNA. Self-Reported information includes everything about yourself, “including your disease conditions, other health-related information, personal traits, ethnicity, family history, and other information that you enter into surveys, forms, or features while signed in to your 23andMe account.” Finally, “Aggregated” means information “combined with data from a number of other users sufficient to minimize the possibility of exposing individual-level information while still providing scientific evidence.”
But what happens if that “individual-level information” is exposed despite the company’s metrics for minimizing that possibility? To say nothing of what happens if and when the ability to read this data improves to the point that we no longer need cumbersome details like names and social security numbers, but instead can, with ever-increasing accuracy, determine identity by “familial tracking” or by mapping genetic data onto medical records onto Googled purchasing histories onto GPS trails onto school records onto criminal data bases….
It is also interesting to contemplate what will happen to one’s data in case of bankruptcy: “In the event that 23andMe goes through a business transition such as a merger, acquisition by another company, or sale of all or a portion of its assets, your Personal Information will likely be among the assets transferred. In such a case, your information would remain subject to the promises made in any pre-existing Privacy Statement.”
If “any pre-existing Privacy Statement” leaves you scratching your head, you need to know that all of the Terms of Service, including the Privacy Statement, are in a kind of constant motion, subject to revision, amendment or replacement, “effective upon posting at www.23andMe.com.“ In other words, purchasers are bound by whatever terms are in the latest version of the contract that 23andMe dreams up. Don’t like that? Then you can choose to “terminate the Agreement at any time,”—even as 23andMe can just choose to hang onto your data for that “limited” but indeterminate period of time.
Under traditional concepts of contract law, such a radical subversion of any expectation interest whatsoever is arguably grounds for striking down an agreement as “illusory” (meaning that it styles itself as promising something palpable, but in fact contains so many loopholes that it holds the company to nothing at all) as well as contrary to public policy. But in an ultra-libertarian moment haunted by rulings in such cases as Citizens United, it seems that judges and CEO’s alike are having trouble divining any difference between the narrow “choices” of a “customer” and the broad human interests of a citizen.
And so the question looms: is the language of “consumer choice” sufficient to address the ethical quandaries posed by the massive accumulation of population-wide genetic stores taxonomized as privately-owned, wealth-producing assets? Does it pose, in crude terms, the same clash of values to be found in the apocryphal sale of Manhattan for baubles and beads—to wit, that indigenous Americans were operating under a so-called gift economy where the use of objects or land was understood as something to be passed back and forth over time (hence the term “Indian giver); whereas the English settlers were operating under a system that entitled them to erect fences, marking their claims as exclusively proprietary, in perpetuity.
Similarly, one must wonder if the easy expropriation of our DNA, particularly when couched as mere parlor “game” or spit “party,” is in any way reconciled with the vast value of what is being ceded: the unplumbed pecuniary wealth as well the as-yet unexplored potential for surveillance and discrimination. An individual might well be led to think that his small contribution of spit is a worthless externality to his purchase of a self-revelatory service that is “entertaining” and “fun” (as Anne Wojcicki has referred to it on more than one occasion) but…less visibly, 23andMe acquires a pot of gold.
Such a transaction also relegates that spat-out bit of golden code to the private sphere, transforms its—or your?–secrets into someone else’s property. Clothed as contract, it is very hard to reclaim a host of genomic interests that we might otherwise think of as beyond the proprietary–like medical ethics or class access or scientific research protocols or new identity formations or protection against fraud.
If the real asset of data ownership is hidden by such contract terms, so too the “service” of “connecting” to one’s ancestors or predisposition to certain diseases is ephemeral at best. Despite the romantic lure of deliverance from the “deleterious me,” the fact remains that genetic science is still in its infancy and quite imprecise for the most part. For most medical prognostication, the probabilities assessed by any direct-to-consumer company are little more than guesstimates. Indeed, 23andMe’s disclaimer of warranty and limitation of liability is eloquent testament to that:
“YOU EXPRESSLY ACKNOWLEDGE AND AGREE THAT: (1) YOUR USE OF THE SERVICES ARE AT YOUR SOLE RISK. THE SERVICES ARE PROVIDED ON AN “AS IS” AND “AS AVAILABLE” BASIS. 23ANDME EXPRESSLY DISCLAIMS ALL WARRANTIES OF ANY KIND, WHETHER EXPRESS OR IMPLIED, INCLUDING, BUT NOT LIMITED TO, THE IMPLIED WARRANTIES OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE, AND NON-INFRINGEMENT. (2) 23ANDME MAKES NO WARRANTY THAT (a) THE SERVICES WILL MEET YOUR REQUIREMENTS; (b) THE SERVICES WILL BE UNINTERRUPTED, TIMELY, UNFAILINGLY SECURE, OR ERROR-FREE; (c) THE RESULTS THAT MAY BE OBTAINED FROM THE USE OF THE SERVICES WILL BE ACCURATE OR RELIABLE; (d) THE QUALITY OF ANY PRODUCTS, SERVICES, INFORMATION, OR OTHER MATERIAL PURCHASED OR OBTAINED BY YOU THROUGH THE SERVICES WILL MEET YOUR EXPECTATIONS AND (e) ANY ERRORS IN THE SOFTWARE WILL BE CORRECTED. (3) ANY MATERIAL DOWNLOADED OR OTHERWISE OBTAINED THROUGH THE USE OF THE SERVICES IS DONE AT YOUR OWN DISCRETION AND RISK AND THAT YOU WILL BE SOLELY RESPONSIBLE FOR ANY DAMAGE TO YOUR COMPUTER SYSTEM OR LOSS OF DATA THAT RESULTS FROM THE DOWNLOAD OF ANY SUCH MATERIAL. (4) NO ADVICE OR INFORMATION, WHETHER ORAL OR WRITTEN, OBTAINED BY YOU FROM 23ANDME OR THROUGH OR FROM THE SERVICES SHALL CREATE ANY WARRANTY NOT EXPRESSLY STATED IN THE TOS. (5) YOU SHOULD ALWAYS USE CAUTION WHEN GIVING OUT ANY PERSONALLY IDENTIFYING INFORMATION ABOUT YOURSELF OR THOSE FOR WHOM YOU HAVE LEGAL AUTHORITY. 23ANDME DOES NOT CONTROL OR ENDORSE ANY ACTIONS RESULTING FROM YOUR PARTICIPATION IN THE SERVICES AND, THEREFORE, 23ANDME SPECIFICALLY DISCLAIMS ANY LIABILITY WITH REGARD TO ANY ACTIONS RESULTING FROM YOUR PARTICIPATION IN THE SERVICES.
…WITHIN THE LIMITS ALLOWED BY APPLICABLE LAWS, YOU EXPRESSLY ACKNOWLEDGE AND AGREE THAT 23ANDME SHALL NOT BE LIABLE FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, CONSEQUENTIAL, OR EXEMPLARY DAMAGES, INCLUDING BUT NOT LIMITED TO, DAMAGES FOR LOSS OF PROFITS, GOODWILL, USE, DATA OR OTHER INTANGIBLE LOSSES (EVEN IF 23ANDME HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES), RESULTING FROM: (a) THE USE OR THE INABILITY TO USE THE SERVICES; (b) ANY ACTION YOU TAKE BASED ON THE INFORMATION YOU RECEIVE IN THROUGH OR FROM THE SERVICES, (v) YOUR FAILURE TO KEEP YOUR PASSWORD OR ACCOUNT DETAILS SECURE AND CONFIDENTIAL, (d) THE COST OF PROCUREMENT OF SUBSTITUTE GOODS AND SERVICES RESULTING FROM ANY GOODS, DATA, INFORMATION, OR SERVICES PURCHASED OR OBTAINED OR MESSAGES RECEIVED OR TRANSACTIONS ENTERED INTO THROUGH OR FROM THE SERVICES; (e) UNAUTHORIZED ACCESS TO OR ALTERATION OF YOUR TRANSMISSIONS OR DATA; (f) THE IMPROPER AUTHORIZATION FOR THE SERVICES BY SOMEONE CLAIMING SUCH AUTHORITY; or (g) STATEMENTS OR CONDUCT OF ANY THIRD PARTY ON THE SERVICES.
Ultimately, the revolution in genomic technology tests the delicate conceptual and jurisprudential relation between the historic sanctity or inalienability of human bodies and the body as product. The discourses of biology and genomics, research and industry all tend to de-center the individual body in deference to idealized, hypothesized, demographic and/or normative interests. It is an epistemic problem: and more often than not, the terms of debate are being framed in a way that discourages public engagement or debate and instead trends toward narrowing for the sake of efficiency of economic outcome.
I hope that 23andMe–and the host of data-mining companies like it—might consider how to channel the wealth yielded from patented discoveries into not-for-profit or low-cost treatment options for all—and certainly for their “direct consumers” at the very least. But if what we strive for is an informed and evidence-based advocacy rooted in social justice, it is not likely to come from competitive ownership of information in a market based on commercial profit alone. If we wish to concede that there is knowledge-value in aggregating data from as broad a base as possible, that knowledge must be tempered by accountability to the basic constraints of civil society, such as protection against discrimination and invasion of privacy. By the same token, hoarding and patenting genomic information so as to exclude others from using it does not enhance scientific discovery as much as the unhindered non-proprietary dispensing of solid data through the (increasingly belittled-as-inconvenient) process of peer-reviewed publication, of shared reconsideration, and of corrected republication if necessary.
Any notion of participatory democracy in this emerging arena must be premised on a diversity of voices—and that diversity will require broad access to the debate not merely to the technology. We seem much too intently focused upon the benefits of aggregating fetishized bits of data from vast pools. It is time we actually engaged the living, speaking subjects who make up the crowd, the sources, and the collectivity of our wisdom.