April 17, 2013   |    This article appeared in the May 6, 2013 edition of The Nation.

Kharey Wise, the oldest of the Central Park Five, is arraigned in court. Photo by the NY Daily News via Getty Images

On April 16, PBS broadcast The Central Park Five, a film by Ken Burns, Sarah Burns and David McMahon. The documentary, based on Sarah’s book of the same name, reviews the hysteria that accompanied the 1990 trial of five young men accused of raping and beating Trisha Meili as she was jogging. Those young men—Yusef Salaam, Raymond Santana, Antron McCray, Korey Wise and Kevin Richardson—were exonerated in 2002 when convicted murderer Matias Reyes confessed, and his DNA was found to match the evidence from Meili’s rape and a string of other unsolved rapes in or near the park.

If ever there was a cautionary tale about why our system presumes innocence, this was it. Yet as Herbert has reflected, in 1990 New Yorkers, including himself, “wanted them to be guilty. And when a desire is strong enough it can overwhelm such flimsy stuff as facts and truth. Reality is a funny thing. It is what we say it is.” Alas, that’s not the definition of reality: it’s the definition of a lie, imposed violently, carelessly, with the full power of the state. So what is the takeaway from the ruined lives of five young men?

First, in direct response to the case, Donald Trump mounted a successful campaign to reinstate the death penalty in New York. But the only thing that could have made this miscarriage of justice worse is if the defendants had been executed with the dispatch Trump howled for. We must rethink myths about the infallible catharsis of the death penalty.

Second, the convictions resulted from a corrupt process. In a clear breach of ethics, the prosecution directed the police investigation from the moment Meili was found, even questioning the defendants before they were charged and in the absence of counsel. The police, too, broke more rules on collecting evidence and questioning suspects than I can list here: but, most unusual, they also testified to much of it—it’s right there in the court record.

Worst of all, the defense attorneys were beyond dismal. Only one was a public defender with real criminal experience. Like many unfamiliar with the criminal justice marketplace, the defendants mistakenly believed that a private attorney is better than a (generally more practiced) public defender. At one point in the film, Yusef Salaam recalls his alarm when he saw Robert Burns, his lawyer, sleeping through crucial testimony. Indeed, Burns fell asleep nearly every day. He slept in full view of the judge and the press. He slept so hard, he once woke up and objected to himself. I fault the judge in this: no responsible officer of the court should have allowed Burns to continue. Competency of counsel is a basic constitutional right. At a moment when law, lawyers and even law schools are under political assault, we ignore their role in a democratic system at our collective peril.

Third, why is it still so hard to make this case the focus of serious public reflection? Given that it was one of the best-covered criminal trials in our history, the 2002 exoneration slipped by with relatively little notice. There is also a great deal of hand-wringing about why “no one” saw the flaws in the case when it was prosecuted. This ignores the fact that the courtroom was visited daily by throngs of people who did see those flaws—and proclaimed them loudly: family, friends, neighbors, residents of Harlem. But they were poor and black and relentlessly mocked in the media as deluded apologists. There were also small cadres of activists who marched in the streets for the defendants, most visibly Al Sharpton. But sadly, a number of them, including Sharpton, squandered that spotlight by blaming the jogger’s boyfriend, for which there was no evidence.

Ultimately, identities of raced gender and gendered race mediated who was heard saying what. Bob Herbert, writing for the Daily News, was hailed not just for his belief that the defendants were guilty, but for his exemplary black manhood, a finger-wagging counterpoint to Sharpton. I got calls from reporters who wanted to know what I “as a black feminist” thought but who hung up when I expressed concern about the strength of the case. To worry that the state had arrested the wrong people was called knee-jerk and Afrocentric; it was heard as an indictment of the victim, as siding with race over gender, rather than as a concern that the real perpetrator might still be loose. Even today, I wonder if this film would be having the same reception had a black filmmaker made it. Would a Charles Burnett or John Singleton have had to negotiate suspicion about motives and sympathies that white directors, positioned in not a few minds as inherently neutral and unbiased, do not? That’s a terrible thought all by itself: if in 2013 we remain as quietly committed to the same counterfactual presumptions of veracity, guilt and “reality” that we did in 1990, then this film documents only a terrible history repeating itself over and over again.

April 17, 2013   |    This article appeared in the May 6, 2013 edition of The Nation.

March 20, 2013   |    This article appeared in the April 8, 2013 edition of The Nation.

Demonstrator Fatimah Shakur speaks during a vigil held for Kimani Gray in East Flatbush, Brooklyn, on Wednesday, March 13, 2013. The 16-year-old was shot to death on a Brooklyn street last Saturday night by plainclothes police officers. (AP Photo/John Minchillo)
The only thing anyone can agree upon is that on Saturday, March 9, 16-year-old Kimani Gray was shot seven times by two New York Police Department officers in East Flatbush, Brooklyn. The police fired eleven shots. Four hit him in the front and side of his body, three in the back.

Gray’s mother says he and his friends were on their way back from a birthday party. Police saw a gang. A neighbor watching from a window says Gray was unarmed, and multiple witnesses say that Gray pleaded for his life. Police say he pulled a loaded gun. Some media reports say the officers were highly decorated for bravery. Other reports note that they had cost the department more than $215,000 in payouts for at least five lawsuits alleging civil rights violations. Police say they found a gun at the scene. A witness says she never saw a gun, and skeptics wonder whether it was a “drop” by corrupt officers.

Then there were the headlines about the NRA’s Wayne LaPierre giving a “fiery” speech at the annual meeting of the Conservative Political Action Conference in National Harbor, Maryland. His references were laced with light racial code, assuming his overwhelmingly white audience was innately and easily distinguishable from “gangs” and the denizens of Chicago. Invoking the language of “stand your ground” laws, he urged them to “take your own stand. Plant your feet firmly in the foundation of freedom.”

What if LaPierre and his audience had been black? After all, young African-American men are most likely to be the innocent victims of gunfire and, in principle, most likely to have cause to invoke self-defense. Of course, a black man expressing such public zeal for weaponry—and riling up a cheering base, no less—without immediate and repressive consequence is harder to imagine. But as long as we’re trying, imagine a world of equal opportunity where LaPierre’s white audience members were as likely to be stopped and frisked on their way out the door of the convention hall.

The degree to which race and geography have become an overly capacious proxy for narratives of criminality is highlighted by yet another story that unfolded soon after Kimani Gray’s death. Baby Survives Harlem Mother’s Death Leap, read a New York Post headline about a woman who committed suicide by leaping eight floors to her death. It is the word “Harlem” that instantly shapes the assumptions about what happened: she must be black, desperately poor, a bad mother, probably on drugs. On its website, the Daily News headlined the same story “Manhattan mother jumps eight stories to her death with her infant son strapped to her chest; baby survives with minor injuries.” With “Manhattan” as the modifier, this mother was more likely to be seen as selfish, desperately ambitious and not on enough drugs for what was assumed to be postpartum depression. It turned out that she was a white employee of the Manhattan State Supreme Court and a graduate of Columbia Law School. (Of course, there was a stereotyped narrative for that as well: Glenn Beck’s news site, The Blaze, reported the story as Lawyer Mother Leaps From 8-Story Building. Commentary from readers was peppered with surmise about whether the woman was a feminazi with a liberal death wish and with relief that there was one less lawyer in the world.)

A consistent theme in all these disparate news stories is the demise of the presumption of innocence. For those in already criminalized communities, this loss amounts to the abandonment of due process under the law. To presume that everybody is guilty of something is to license responses that assume no need for proof; it undoes our system of justice by validating the notion that we know from the outset what guilt looks like. It enables a literal rush to judgment. It unleashes a killing instinct that shrugs at tragedy as “hindsight.”

The presumption of innocence allows for a moment of collective hesitation before we indulge the voices in our heads—the stereotypes as well as the archetypes that inevitably inflect a culture. It is the collective deep breath that allows us to imagine the humanity in each of us, the possibility of mistake. Crime happens. But despite the horrific rates of segregation, violence, incarceration and inequality at every stratum of our nation, we are not yet in a full-blown war against ourselves. To reorganize the structures and expectations of civil society as though we were, however, assures the same, and locks us into the unbreachability of a dangerously deepening divide.

Back in Brooklyn, demonstrators against New York’s stop-and-frisk policy have merged with those who mourn Kimani Gray. There have been calls—by a familiar cast of noisy people, disgruntled people, black people, poor people, weary people, people smelling of grief and despair—for sixteen days of street protest, a day for each year of Gray’s life. In response, police have erected barriers and nets to contain what they feel will be rioting and looting.

Published on The Nation (http://www.thenation.com)

Patricia J. Williams | January 16, 2013

Source URL: http://www.thenation.com/article/172260/guns-democracy-and-supreme-court

 

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.

November 7, 2012   |    This article appeared in the November 26, 2012 edition of The Nation.

A man walks through piles of debris that have not been removed by the Department of Sanitation outside of homes damaged from flooding that inundated the area during Hurricane Sandy in the Queens borough neighborhood of Belle Harbor, New York, November 8, 2012. Reuters/Lucas Jackson

The moment of the Republican National Convention that stands out for me was not Clint Eastwood’s conversation with a chair full of air. Rather, it was when Mitt Romney proudly purported to distinguish his agenda from that of President Obama. Vowing to take “full advantage of our oil and coal and gas,” he went on to make a remarkable contrast. “President Obama promised to begin to slow the rise of the oceans and heal the planet,” he said, smirking and rolling his eyes while the audience roared with derisive laughter. “My promise…is to help you and your family.”

In truth, Obama’s track record of planetary healing hasn’t been all that great. But it was Romney’s sneering dismissiveness of the very thought that revisited me as Hurricane Sandy howled into New York City. I’ve had the same shudder of alarm during every hurricane over the last decade, regardless of who’s in charge, for the political absurdity feels as huge as the tragedies themselves: George W. Bush’s consulting with oil executives to develop climate change policy. Enduring indifference to American infrastructure. Sarah Palin’s anthem of “Drill, baby, drill!” The United States’ failure to sign on to even the weakest of climate change conventions, like the Kyoto Protocol.

Meanwhile, the last two decades have seen a pattern of planetary fever and chills. Studies establish that human activity is causally related to the melting of the Arctic ice, the collapse of fish stocks and the rapid rates of extinction within all classes of life forms. It’s not a question; it is fact.

After 9/11, planes were grounded for three days; since then, climatologists have wondered if a rare spike in the range of daytime and nighttime temperatures in the same period was due to the lack of jet engine “contrails” in the sky. Imagine if we had the political will to ground planes again to further test this phenomenon. Imagine if we had the will to ban driving one day a week.

But peacefully bringing the engines of industry to a halt is not going to happen, neither for experimentation nor for putative healing. In the meantime, we can fight over whether a state should be able to defy federal guidelines and dictate who can build more houses on their shores; whether earthquake disaster relief can be used for hurricane victims; whether one nation should rein in its pollution problem if another won’t do it first.

Or we could see this as a matter of the looming extinction of much of what sustains life forms such as ourselves. There’s much to suggest that unless we do something fast, air quality will continue to deteriorate, temperatures to rise, and oceans to become too acidic to support their present vibrant diversity.

Some argue that individual states and municipalities are better able to decide how to handle disasters, that more jobs will be created that way, serving more local businesses. But making states compete for resources in the face of environmental disasters that do not respect political or geographic boundaries is like having daylight savings time on Fifth Avenue but not on Sixth: it’s inefficient, confusing and costly. And it’s unfair. Most insurance policies don’t cover flood damage anymore, for example; if it’s economically rational for companies not to take that kind of risk, what kind of moral sense does it make for governments—charged with the public interest—not to fill that gap with some kind of safety net?

Few will forget that, during Hurricane Katrina, some residents of the Ninth Ward died not from drowning, but because authorities were apparently given a greater charge to protect property than to save lives. On Danziger Bridge, police shot at an unarmed black family who appeared to be heading toward the higher ground of a white neighborhood. The bridge is a good metaphor for how we might approach a future of droughts, fires and storms. We can sustain our bridges as pathways that link us, or we can burn them and dig deeper moats. We can address climate stress as collective catastrophe, or we can draw a thousand thin blue lines to mark a multiplicity of war zones.

In New York City, 50,000 homeless people need shelter every night. Hurricane Sandy displaced tens of thousands more. Despite exhortations from the mayor, many homeless people resisted going to the shelters—underfunded facilities that deserve their reputation as being madhouses of chaos and assault. Regardless of the forecast, many instead seek refuge deep inside subway tunnels. I wondered about them as those tunnels flooded. Did a welfare system that makes living in a subterranean cave seem like a life-sustaining option send evacuation notices to those hidden colonies in time?

I also thought of the wealthier denizens in the sleek high-rises, whose storm prep meant clearing the shelves at Gourmet Garage. Many of them stayed too, preferring to brave the lack of lights, elevators, heat and water in deference to their fear of public spaces. I confess I was among this latter group, snuggled under the covers in cashmere socks, bobbling upon the fantasy that my end of the Titanic really was “Nearer My God to Thee,” and that there would be lifeboats for my kind.

In the longer term, however, the risk to planetary life places us all onboard a sinking ship. All hands are desperately needed to widen our sense of what’s at stake: Will a tree dying in the forest be heard? Will a bee dying of insecticide be felt as a loss in the human hive? Will humanity see itself—in all its variety—as one species, to say nothing of one species interdependent with many?

There’s nothing wrong with the babble of prayer politicians proffer in the face of disaster, but faith and miracles do not a system of earthly governance make. The very etymology of the word ”republic” is a condensation of res publicae: Latin for the law governing public property, or shared roads, bridges and waterways. After all, even Noah finally got down to the business of building an ark.

To help the hurricane victims, please consider donating to the Coalition for the Homeless or Housing Works.

 

Patricia J. Williams on October 19, 2012 – 2:59 PM ET

            “I learned a great deal,“ said Mitt Romney when asked about women’s pay equity during Tuesday’s debate.   He was referring to his term as governor of Massachusetts, when, while assembling his senior staff, he became golly-gee-gobsmacked by the fact that “all the applicants seemed to be men.” Romney was governor of Massachusetts from 2003 till 2007, not the dark ages, so this lack of women in his world seems to have come to him later in life than most. Nor is it a question he seems yet to have asked about the upper management ranks of Bain Capital Private Equity (24 women out of 164 according to their online photo gallery), Bain Capital Ventures (3 out of 36), or the Republican Party leadership for that matter.

But better late than never, right? Clueless, brand-spanking-new Governor Mitt then proceeded to interrogate his staff: “How come all the people for these jobs are all men…” How come, indeed? However in the world? Pray decipher this mysterious riddle.  The answer envelope please: “Well these are the people who have the qualifications.” 

“Well gosh” said Mitt, who apparently lives in a world where “gosh” is acceptable parlance among hepcats, ”can’t we find some women that are also qualified?”  Well gosh yes, Mr. Romney!  And the next thing you know, he and his team were making “a concerted effort to go out and find women who had backgrounds that could be qualified to become members of our cabinet.  I went to a number of women’s groups and said can you help us find folks?  And they brought us whole binders full of women.”

I can’t do better than the fifty shades of parody that already suffuse the internet, so let me skip over the obvious.  Indeed, the deliciously salacious and show-stopping nature of that particular metaphor has tended to obscure the no less startling significance of what Mitt said next:  “One of the reasons I was able to get so many good women to be part of that team was because of our recruiting effort, but number two because I recognize that if you’re going to have women in the workforce that sometimes they need to be more flexible.”

Mitt Romney, in other words, would seem to have been endorsing affirmative action.  His own description of what he did in Massachusetts is exactly the practice just argued last week before the United States Supreme Court, in the case of Fisher v. Texas.   Hear it again, paraphrased with race instead of gender:  How distressing! All the applicants appear to be white! Good gracious, can’t we find some blacks and Latinos that could be qualified to be part of the team? Let’s make a concerted effort to seek out some black-people groups and see if they can help us find folks we can recruit into the ranks of Bain Bond-age!  (As an interesting aside, Bain Capital Private Equity has 0 black faces on its portrait gallery of upper management team; Bain Capital Ventures, 1.)

That said, it’s possible that Romney doesn’t understand what affirmative action really is.  To the Republican Party, as well as to many misinformed Americans of other political stripes, affirmative action signifies “unqualified,” as well as “reverse” discrimination, specifically against white men.  Through this smeared lens, integration seems a zero sum game, rather than a process of inclusion for all.  But the actuality of affirmative action means widening a given pool of people considered, by searches and by advertising, and then applying an “all things being equal” or so-called “mild preference” for under-represented groups like women, minorities or the economically disadvantaged.  Again, it is precisely what Romney describes himself as having done.   

But the Supreme Court seems set to strike even that little down.  In the 2007 combined cases of Parents Involved in Community Schools v. Seattle School District and Meredith v. Jefferson County Board of Education, Chief Justice John Roberts wrote that “the way to stop discrimination on the basis of race is to stop discriminating on the basis of race.”   If this overly simplistic logic of “colorblindness” is extrapolated to women’s rights (as in, “I don’t see gender”), then Romney was sexist for so much as noticing that the pool was all-male.  In the Fisher case, where the University of Texas is defending its practice of taking race into mild account to diversify the admission of twenty percent of its class, the Court seems poised to take that logic to precisely such an extreme ideological and anti-remedial end. 

Of course, one of the peculiar features of the current debate around affirmative action is that accusations of “preference” only seem to come into obvious play when the job-seeker is black.  Confusing the issue further has been a very self-conscious tactic on the part of right wing organizations to make women their lead plaintiffs in attacks on affirmative action; indeed all the major cases in recent years have featured white females suing schools for discrimination based on race—as in (Cheryl) Hopwood v. Texas, (Barbara) Grutter v. Bollinger, (Jennifer) Gratz v. Bollinger.  This intentional placement of race and gender on opposite sides of the table disguises the degree to which precisely the same arguments can be—and have been historically–used to defeat women’s quest for inclusion in schools and employment.  Indeed, Justice Ruth Bader Ginsburg has written about the then-dean of Harvard Law School’s complaint back in the 1950’s that admitting any women at all was bad for the profession, resulting only in the displacement of more productive male students.

 Thus, the extent to which gender- and color- “blindness” is deployed as a strategy for selectively protecting norms of inequality becomes clearer when one applies that standard across a broader spectrum than race.   It also clarifies the degree to which Romney’s anecdotes during the debate are at factual odds with his policies and executive actions.  Suppose, for example, we just ask if all those women Romney supposedly hired in Massachusetts weren’t displacing “more qualified” men.  Perhaps looking through that filter would explain why, despite Romney’s debate claims, the number of women appointed to public leadership positions actually declined during his governorship.  Suppose, too, that we just re-label all that “flexibility” Romney said women (but not men?) needed, and call it “special treatment” and “special accommodations” and “special favors.” After all, doesn’t whining about having to go home and make dinner for the kids sound awfully like the kind of “entitlement” that his favorite 47% of Americans call for when suffering from a bad case of the “victim”-hood crankies?  Perhaps that lens explains why, six months into his governorship, Romney eliminated the Massachusetts’ Office of Affirmative Action. 

It’s hard to decipher whether Romney is lying about his commitment to integration, or whether, despite his fine education at Harvard Law School, he really doesn’t know what affirmative action is.  After all, as a cultural matter, virtually no American of any stripe thinks to ask what kind of affirmative action put Representative Paul Broun onto the House Committee on Science and Technology when he decries embryology, evolution, and climate science as “lies” delivered from the pits of Hell.  No one thinks to ask if Representative Todd (“legitimate rape”) Akin didn’t displace a smarter, more-deserving black female applicant to Worcester Polytechnic Institute—which school actually granted that numbskull a degree in management engineering.

Regardless of whether Romney is dissembling or just ignorant, there is a more comprehensive ideological logic at work in the answer he gave on Tuesday.

His solution for helping “young women and women of all ages” is:  “We’re going to have employers in the new economy, in the economy that I’m gonna bring to play, that are gonna be so anxious to get good workers they’re gonna be anxious to hire women.”  It will be, he promised, an economy “so strong that employers [will bring] them into their workforce and [adapt] to a flexible work schedule that gives women the opportunities that they would otherwise not be able to afford.”  This dreamy poppycock is absolutely consistent with his and Paul Ryan’s libertarian extremism.  Economic forces alone will make employers want to hire women; there’ll be so many extra jobs they’ll have to hire some women.  Trust the invisible hand…

So let’s just assume for a hot hypothetical second that every woman in the nation were employed.  The precise issue Romney was asked was about pay equity: about all those women doing twice the work of their male peers, backwards and in high heels, but getting paid less for it and being passed over for promotion while the men they train leap over them and up the corporate ladder.  While it was terribly kind of Romney to let his chief of staff go home to do family things, he never answered the question of what executive action he would take to ensure equality of opportunity as a legal matter and of right.  Again, that’s because, as a far-right libertarian, he doesn’t believe there’s a role for government to do anything other than defend the borders and leave businesses to their own devices.  

But left to market forces alone, we have… well, we have what we have:  77 cents to a man’s dollar.  Consignment to jobs that ensure all the women go home in time to make dinner, while the big boys stay on to do the heavy lifting.   Just ask Lily Ledbetter.