Genetic Endowments…..

 

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.

Body Politic

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

 

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How Our Genetic Maps Are Being Sold to the Highest Bidder

Patricia J. Williams | June 6, 2012

Who owns our bodies? One of the weirder cases exploring this bioethical question 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 barbecue 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 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 situation 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”? Or do they fall in the realm of what we deem constitutionally “inalienable”? A devastating disease.

What about DNA? Suppose we assumed that Wood’s genetic makeup included cells that were resistant to AIDS. 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’s entire genome as part of his Halloween 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 $5,000 a dose? We all leave a trail of hair and hangnails wherever we go—under what circumstances should that material be regarded as discarded and thus open for exploitation by finders-as-keepers?

At the end of May 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 have 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 realize that “research” is defined as purely “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 that new ideas are most apt to be freely shared and tested; Wojcicki seemingly wants to dislodge 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 she is married to Google co-founder Sergey Brin, whose family history of Parkinson’s disease places him at risk. But that backstory, compelling though it may be, is not reflected in the business model either of them pursues—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 healthcare will not come from the private corporate sphere by itself.

The patent system, as well as our corporatized system of R&D, assures that the real wealth of data-aggregating businesses 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. In 2010, when classes at Stanford and Berkeley held “spit parties” to analyze students’ genetic material, I wrote in these pages that “we should be 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.”

I hope 23andMe will consider how better to channel its discoveries into nonprofit, low-cost treatment for all—or for its “direct consumers,” at the very least. It’s hardly a new ethical challenge. Consider The Immortal Life of Henrietta Lacks, by Rebecca Skloot. Lacks was a poor black woman who suffered from a unique form of cervical cancer, to which she succumbed in 1951. While she was at Johns Hopkins, her doctor removed some of her cancer cells, cultured them in a petri dish and distributed them for research purposes. It was the first “immortal” human cell line, and it has been the foundation for billions of dollars’ worth of medical and pharmaceutical discoveries. Neither Lacks nor her family was informed of the removal of her cells or the profit derived from them. When Skloot located Lacks’s children and grandchildren, she found a family still poor and without healthcare. Skloot’s response was to set up a nonprofit foundation that provides emergency healthcare and medical scholarships to those in need. Donations may be made by visiting henriettalacksfoundation.org [1].

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Source URL: http://www.thenation.com/article/168261/how-our-genetic-maps-are-being-sold-highest-bidder

Links:
[1] http://henriettalacksfoundation.org

THE GENOMIC IMAGINARY

GENEWATCH Magazine,
Volume 25 Issue 1
Genetics in 20 Years
Jan-Feb 2012

http://www.councilforresponsiblegenetics.org/GeneWatch/GeneWatchPage.aspx?pageId=409

By Patricia Williams

I teach a Justice and Bioethics class that, over the years, has attracted not only law students, but students from a grand variety of disciplines including medicine, engineering, biology, anthropology and journalism. At the beginning of every semester I do a silly little exercise as a way of putting on the table all the romantic images they might be harboring: I ask them to draw a cartoon depicting the DNA in their own bodies. Very few draw molecular topology. Indeed, no matter how sophisticated their backgrounds in biochemistry or genetics, whatever they draw is almost always relentlessly pre-modern: little men scurrying about with messenger bags; “a womb inside each cell”; mini-drones circulating just beneath the skin; “a golden fully-formed-but-microscopic Me, floating in the thorax”; a Harvard beanie; Da Vinci’s Vitruvian Man; a “biological Torah in the Ark of the body.”

The symbolism embedded in these framing metaphors and tropes-as delivered up by even the most secularly scientific minds-is intriguing. These are images of faith and karma and alchemy, of holy text and of the resurrection of the body-as well as of entitlement and preordination. While I ask my students to do this exercise as a way of externalizing what might otherwise remain fairly unconscious associations, these filters are persistent. They remain on the table, they do not go away.

When I contemplate the next few decades of genetic technology and research, I think of those students and what roads their chosen taxonomies will chart through the genetic forest, the mind-maps their nominations will impose upon our collective understanding. In twenty years, I have no doubt that the actual science of genomics will have continued to expand explosively. I have no doubt that we will have medicines that at present we would think of as miracles. We will have access to our farthest ancestral links. Governments, schools, employers and corporations will have access to our farthest ancestral links as well. Recombinant and synthetic biology will revolutionize our conception of reproduction and the life cycle itself.

That said, the little gallery of drawings I keep convinces me that the most important questions we face now and will then are age-old: how will we distribute the benefits of new knowledge? Will this sudden source of power and wealth be translated into public health benefits, or hoarded by elites? Will biologized notions of “endowment” displace or supersede notions of political equality?

The ability to read DNA quickly and cheaply, moreover, will put big holes in much of what we presently consider private as a matter of right. Similarly, the surveillance possibilities will give new meaning to the expression “You can run, but you can’t hide.” Finally, the delicate conceptual and jurisprudential relation between the historic sanctity or inalienability of human bodies and the body-as-product will be vexed; for if medical research is ostensibly the driver of many recent genomic discoveries, the designated funding behind that research surely exists in ambiguous tension with corporatized pharmaceutical interests.

What I hope we will have refined by then is our sense of urgency about the social justice issues presented by genomics. I hope that we will have embraced this science for what it teaches us about our common humanity and our interdependence with all other life forms. I hope that we will be guided by respect for the dignity of organisms and caution about unintended consequence, rather than by commercial profit, magical thinking, predestination, hubristic risk disguised as “progress,” mutilation masquerading as “improvement,” or eugenics doing business as…usual.

This is what I hope. But that is also what I fear.

Patricia J. Williams, JD, is a Professor of Law at Columbia University and a member of CRG’s Board of Directors. She writes a monthly column for The Nation called “Diary of a Mad Law Professor.”

Save the Children?

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Patricia J. Williams | December 2, 2010

‘Twas well after midnight when I came across some morsels of advice from the Ontario-based website familyadoptionplan.com. Under the listed advantages of international adoption is the proposition that “it allows adoptive parents to be matched with children that share their ethnic heritage…. It also allows socially conscious couples to bring a child into a much more advantageous and privileged living situation than would be possible in the child’s country of birth.”

Contrast that with the site’s description of domestic adoption: “One major drawback is that there is no guarantee that the child you want will end up being placed with you. Public adoption agencies serve the interests of the child, not the parents, and will always place the child in the situation they feel is best for him or her…. You must also accept that many children waiting to be placed…come from difficult backgrounds and may have been emotionally, psychologically, physically or sexually abused. Developmental delays and medical conditions…[are] a risk you have to assume as a prospective parent of a domestically adopted child.”

I spend a good bit of my professional life studying the ethics of adoption, and familyadoptionplan.com is hardly alone in its assumptions. There are at least 18.5 million children worldwide who have lost both parents, and their plight is largely shaped by North American parenting preferences. From the rushed airlifts of Vietnamese, Korean and Haitian babies (some who later turn out not to be orphans at all), to the rage for Chinese girls, to Madonna’s splendiferous beneficence—popular culture too often interprets international adoption through the lens of a “first world rescues third world innocents” narrative. What’s missing from this tidy plot is sensitivity to the social disruptions that render so many children homeless to begin with. Here are some thoughts about how to rechannel this mythology.

First, it would be helpful not to disaggregate international adoption from domestic (American) adoption. For example, there is a misperception that there’s a “baby shortage” in the United States. This is true only if one modifies the term to mean “healthy white newborns.” There are tens of thousands of adoptable domestic children of color. The silence about their plight allows many to imagine (a) that American adoption practices are irreproachably race-neutral; (b) that all children in the developed world are better off than anyplace else in the world (when, in fact, we have just about the highest infant mortality rate of any industrialized nation); and (c) that our culture of adoption is unassailably moral.

The plight of homeless children in war-torn or poverty-stricken places is surely heartbreaking. And relatively speaking, children in the industrialized West are many times better off than the average child in Sierra Leone. But let’s not confuse “helping” global crises with the individual decision to adopt a child. We have an international crisis of child protection; but that’s not something that adoption alone, or even primarily, can fix. It’s just not a great idea to adopt a child because you want to end war or cure world hunger. Maybe you should work for an NGO instead or help plow a field. Such efforts are often undervalued, but they contribute significantly to the betterment of dispossessed children.

To posit adoption as “rescue” from turmoil risks inflecting the personal family dynamic with missionary smugness in a way no child should be asked to endure. For example, if you adopt your nephew and raise that child with the message that you are Mother Teresa for having taken him in and that he’s ever so lucky to have been rescued from sluttish “Aunt Sally”… Well, it’s got to be hard for a kid not to feel ambivalent about the part of himself that is born of Aunt Sally. Similarly, in many international and interracial adoptions, kids are raised to look down on their origins and “feel lucky”—to their documented distress.

Furthermore, adoption has become a form of trafficking in and of itself. The exchange of money, though facilitated by public policy, is particularly evident in the private adoption context. This commodification allows too many to think it is appropriate to “return” adopted children when problems arise, like so many damaged goods.

One can also observe here a fluctuating eugenic value system. If China values boys over girls, Americans choose girls over boys, no matter where they’re from. Color-ism and fad figure prominently in this perverse ranking, with prospective parents seeking kids from Eastern Europe, Africa and South Asia according to cultural images about who is more “like” whom, who is “born smart,” who is prettier, who “exotic.” But Angelina Jolie’s influence notwithstanding, the day-to-day discomfort we have talking about race and ethnicity ultimately leads to the conclusion that a healthy domestic black child must be harder to live with than a catatonic child from a Romanian orphanage.

Finally, the issue of international adoption needs to be examined alongside the developing market for assisted reproduction. More women are seeking in vitro fertilization or are using surrogates (often dark-skinned surrogates in the third world). Assisted reproduction is a well-funded industry that thrives on the idea that family is biological, or that women who are “desperate” to have children can do so only through “their own” eggs or, even better, “designer eggs.”

In truth there is a “wealth,” not a shortage, of children who need homes. Yet we seem to be narrowly rebiologizing “family” precisely at a moment when we should embrace our common humanity. Without a basic assumption that all the world’s children are “our own,” we’ll never get past that unspoken sense of exoticism and boundary that fuels consumerism and neglect in the social sphere—or solipsism and disappointment in the personal.

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Source URL: http://www.thenation.com/article/156796/save-children

 

bring your genes to cal….

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

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Freshmen Specimen

Patricia J. Williams | September 9, 2010

The school year at the University of California, Berkeley, began with a swab. In a program called Bring Your Genes to Cal, 5,500 incoming freshmen were asked to provide samples of their saliva in an experiment designed to bring the student body together in the same manner that reading To Kill a Mockingbird might have in the past. The more than 700 students who responded had their DNA analyzed in Berkeley’s (uncertified) labs, assessed for susceptibility to alcoholism, lactose intolerance and relative metabolism of folic acid. The exercise provoked an international debate about the ethics of the assignment. Ultimately, the California Department of Public Health barred the university from dispensing individual profiles on the grounds that genetic analysis is correlative only and is neither necessarily predictive nor diagnostic at this point. A collective comparison of the class’s genetic data was permitted, however, and circulated in “anonymized” form at orientation.

There are several reasons that Berkeley’s undertaking should give us pause. The first and most obvious is that of privacy: this information reveals more than we can yet interpret at the singular, embodied level of human identity. DNA decoding will become infinitely more precise in the near future, and with that growing precision in familial tracking and biological identification, “anonymizing” results by removing names and Social Security numbers will mean less and less.

Second, Who owns, or ought to own, these data? Although the Berkeley experiment is framed as an exploration of a vast genetic commons, this information is the subject of intense commercial speculation. And the degree to which specific gene sequences may be patented is quite contested in the law. Should you, as the biological vessel of a particularly exploitable bit of genetic material, receive any remuneration? Are your genes to be valued, in purely pecuniary terms, as akin to a deposit of oil beneath your land? Once genes are patented, can rival researchers be barred from working on the same material?

Another problem with Berkeley’s DNA swabbing is that it perpetuates the assumption that DNA analysis is as good as or the same as personalized medicine. Despite large gaps in understanding and the astonishing absence of standards, the results of genetic research are often held as being far more definitive than yet shown. The mere phrase “genetic correlation” is heard as a 100 percent infallible guarantee of whatever follows. This assumption is often implicit in the advertising of some direct-to-consumer companies like Navigenics and 23andMe. Indeed, both companies were hired to analyze the results of a medical school class’s “spit party” at Stanford University recently.

On July 22, however, the Government Accountability Office issued a report that advised consumers of the scientific uncertainty of individual results, in which assessments of risk varied widely from company to company. The GAO also found “10 egregious examples of deceptive marketing, including claims made by four companies that a consumer’s DNA could be used to create a personalized supplement to cure diseases. Two of these companies further stated that their supplements could ‘repair damaged DNA’ or cure disease, even though experts confirmed there is no scientific basis for such claims…. Two other companies asserted that they could predict in which sports children would excel based on DNA analysis, claims that an expert characterized as ‘complete garbage.’ Further, two companies told GAO’s fictitious consumer that she could secretly test her fiance’s DNA to ‘surprise’ him with test results—though this practice is restricted in 33 states. Perhaps most disturbing, one company told a donor that an above average risk prediction for breast cancer meant she was ‘in the high risk of pretty much getting’ the disease, a statement that experts found to be ‘horrifying’ because it implies the test is diagnostic.”

This is not to say that genetic testing shows nothing at all, but the results inform only at the aggregate level or as a set of probabilities. This explicitly aggregate data collection has been the subject of yet another controversial program, called Gopher Kids, conducted by the University of Minnesota at the annual state fair. At a booth adorned with balloons and a cute animal mascot, researchers offered free T-shirts and amusement park rides to parents and children willing to submit saliva swabs and answer a lengthy questionnaire about lifestyle. The university advertises participation as altruistic, a contribution to public health and human knowledge. The problem with this is that, again, the law is not settled about whether our genetic makeup is more the property of the excavating mind of the scientist or the individual property of a particular identified body.

Finally, there is the question of motive. Spit parties are boosted as ways to get to know one another in the social realm—as though it were a collective séance or a big, slimy Ouija board. But the real reasons that so many companies market swabbing kits is not entirely altruistic: there is huge money to be made in expanding the data sets as broadly as possible. The predictive probabilities involved in reading genes for disease or physique or ancestry can become more precise only by sifting through data of whole populations and then correlating frequencies of particular conditions with particular genetic clusterings. This, it is thought, will be very valuable in devising and marketing pharmaceuticals, as well as in forensic identification technologies.

As we enter the genomic era, we should be 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, in the name of a gift, enabling a commodity exchange in which important aspects of our identities will be sold to the highest bidder.

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Source URL: http://www.thenation.com/article/154596/freshmen-specimen

Hidden Assets

The Hidden Cost of DNA Banking

Diary of a Mad Law Professor

by PATRICIA J. WILLIAMS

This article appeared in the April 12, 2010 edition of The Nation.

March 25, 2010

In March 2009, Lily Haskell was arrested while attending an antiwar demonstration. Within hours she was released. Although she was not charged with any crime, her arrest alone was sufficient for her to be required to submit a DNA sample. The ACLU of Northern California filed a lawsuit on her behalf, challenging the constitutionality of the statute mandating police to retrieve and retain DNA from anyone arrested for a felony. As Michael Risher, Haskell’s attorney, asserted, the statute subjects innocent Californians to “a lifetime of genetic surveillance” with no judicial oversight, simply because they might have wandered into the field of suspicion of a single police officer.

The collection of DNA has mushroomed in the past five years. California has the third-largest forensic DNA database of any government entity in the world (behind Britain and the US government). All three collect DNA from arrestees regardless of guilt. All three have databases highly skewed by race and class. In Britain 42 percent of black men have had their DNA sampled and stored. Until recently, however, forensic DNA samples were retained only from convicted felons who had committed violent or sexual offenses. With very little oversight or consistency, local rules for collection in criminal cases have expanded haphazardly, often including anyone who is arrested even mistakenly. People may challenge the retention of their DNA and sue to have it expunged, but that process can take years.On March 6 of this year President Obama appeared on America’s Most Wanted to announce support for taking DNA from all arrestees, for banking that data and for keeping it without restriction even if there is no subsequent conviction. Undoubtedly it would have been much more controversial if he’d advocated DNA collection for all citizens, but his proposal seems to have slipped under the radar when framed as “only” for arrestees. By this metric “innocence” becomes a matter of degree, with certain people less innocent than others, marked by suspicion, kept on file, looked at first, disproportionately subject to the vicissitudes of laboratory and storage error. And even if mistakes are rare, it is exceedingly hard to persuade anyone of that if you are tossed in with a category the public deems inherently suspicious.

Obama and John Walsh, the host of America’s Most Wanted, endorsed the patently false idea that DNA is no different from fingerprinting. DNA samples can potentially reveal data about all kinds of other aspects of the self, including probabilities for certain health conditions, and can potentially implicate close family members. Employers and insurance companies are already hungering for DNA analysis that may allow them to refuse jobs or coverage to those with the mere hint of genetic predisposition to certain medical conditions (never mind pre-existing conditions).

In addition to the invasion of privacy, we must also weigh the possibility of technical mistakes. As a report from the National Research Council observes, “There is no uniformity in the certification of forensic practitioners, or in the accreditation of crime laboratories.” That measure of human error is never conveyed in narratives touting the perfect infallibility of DNA evidence.

Furthermore, while DNA has been vaunted as a revolutionary tool of exoneration–in ruling out suspects, in other words–it is much less precise as a mechanism of positive identification when dealing with “cold hits,” that is, attempting to match DNA fragments from a crime scene against samples stored in massive databases. Bioethicist Erin Murphy clarifies the point by comparing DNA typing to blood typing: “Imagine a murder scene at which police find a blood sample certain to belong to the killer. Crime scene technicians…show that it is type O. Later, the police find and draw blood from two suspects. One suspect is type AB; the other is type O. We can, with unreserved confidence, say that the first suspect is not the killer; but regarding the second suspect, we can only say that she is included within the class of people that includes the killer. The probability that she is the actual killer turns on how many other people have that blood type, along with any other evidence that we might be able to adduce.”

Finally, we risk sacrificing the American credo of free will: that we endeavor and achieve even when such accomplishment may be against otherwise calculated odds. DNA, for example, is being collected privately from those who submit samples for genetic ancestry tracking or from young professionals who pay thousands to outfits like 23andMe in exchange for overly deterministic pronouncements about “the gene for” this or that. This collection and storage of DNA by private means is thoroughly unregulated. The Genetic Information Nondiscrimination Act of 2008 prohibits insurers and employers from using genetic prediction in hiring or coverage, but the act is easy to circumvent. For example, every time we dispose of a coffee cup or a hangnail, that “garbage” is open to the exploitation of others, including police. Few who contract with genetic ancestry tracking or “personalized medicine” companies realize that their profit is derived both from consumers and from reselling their samples out the back door, in supposedly “anonymized” form, to research institutions and insurance companies. “Anonymized” means that names, addresses, Social Security numbers and birth dates are kept confidential. But less than 1 percent of the information that the human genome contains has been reliably decoded. The day is surely not far away when names and Social Security numbers will be quaintly unnecessary in pinpointing identity.

We are at the very beginning of a scientific revolution that will no doubt profoundly unsettle certain notions of privacy and bodily integrity. The rampant, unreflective “bio-prospecting” occurring in public law-enforcement agencies and at private-sector data-mining companies should give us pause.

Council for Responsible Genetics, Race and Genetics Project: briefing paper

http://www.councilforresponsiblegenetics.org/Projects/CurrentProject.aspx?projectId=8

THE ELUSIVE VARIABILITY OF RACE 

 

Patricia J. Williams, JD 

 

      The question of race is, at its core, a questioning of humanity itself.  In various eras 

and locales, race has been marked by color of skin, texture of hair, dress, musical 

prowess, digital dexterity, rote memorization, mien, manners, mannerisms, disease, 

athletic ability, capacity to write poetry, sense of rhythm, sobriety, childlike cheerfulness, 

animal anger, language, continent of origin, hypodescent, hyperdescent, religious 

affiliation, thrift, flamboyance, slyness, physical size, contamination and/or presence of a 

moral conscience.  As random as such presumed markers may be in the aggregate, they 

have nevertheless been deployed to rationalize the distribution of resources and rights to 

some groups and not others.  Behind the concept of race, in other words, is a deeper 

interrogation of what distinguishes beasts from brothers;  of who is presumed entitled or 

dispossessed,  person or slave, autonomous or alien, citizen or enemy. 

 

       In the contemporary United States, race is based chiefly on broad and variously 

calibrated metrics of African ancestry.1  To get a full sense of the ideological incoherence 

of race and racism, however, one must also include the longer history, in other contexts– 

whether the centuries-old Chinese condescension to native Taiwanese Islanders,2 the 

English derogation of the Irish for “pug noses,”3 the plight of the Dalit (i.e., 

untouchables) in India,4 or comprehensively eugenic regimes like Hitler’s that threw into 

the ovens Jews, homosexuals, tinkers, conceptual artists, nomadic peoples, the sick and 

anyone else designated less than “well-born.”5 

 

       Despite the enormous definitional diversity of what race even means, and despite the 

fact that the biological studies—from Charles Darwin’s observations to the Human 

Genome Project–have patiently, repetitively and definitively shown that all humans are a 

single species, there remain many determined to reinscribe a multitude of old racialist 

superstitions onto the biotechnologies of the future.  Despite that biological evidence– 

and in the social sciences, a towering body of social science that is cumulative 

(observations over time), comprehensive (multiple levels of inquiry) and convergent 

(from a variety of sources, places, disciplines)—still we are asking the same centuries-old 

questions. 

 

       That said, for purposes of this paper let us stipulate that race is not a “scientific” or 

biologically coherent category.  I ask for such stipulation because it is beyond my scope 

to prove or disprove creationist theories of polygenesis, or theological tracts about God’s 

intention to keep races separate, or essentialist polemics about whether black women are more or less endowed with testosterone than white men. 

          It is true that race-as-biology remains a major hurdle in the cultural imagination: at one extreme, there are those zealots who actively deploy races as the innate mark of beings so different that they constitute another species altogether–aliens, sun or moon types, untouchables, non-persons, beasts. 

And at the other end of the ideological spectrum are those ordinary creatures for whom 

discussions of race remain heavily inflected by assumptions of biological difference, //if// 

as a largely unexamined and unconsciously malleable mush of assumptions about genes, 

social history, law and culture.  

 

       Ergo, let us just agree that, as hard as many have tried to find it, there is no allele for 

race (as distinct from skin color); there are no separate proteins indicating that some of us 

are chosen by God over others; and there is no distinct cellular pattern that distinguishes 

the tribal intelligence of any one group on the planet as opposed to another.  At the risk of 

being tedious, I underscore this point precisely because it, like some of the most 

reproducible of scientific consensuses–like evolution, climate change and the value of 

vaccinations–remains fiercely disputed as “mere” contestable “theory”.      

 

         So what is race if not biology? 

 

         Race is a hierarchical social construct that assigns human value and group power. 

Social constructions are human inventions, the products of mind and circumstance. This 

is not to say that they are imaginary. Racialized taxonomies have real consequences upon 

biological functions, including the expression of genes. They affect the material 

conditions of survival–relative respect and privilege, education, wealth or poverty, diet, 

medical and dental care, birth control, housing options and degree of stigma–freedom 

from stigma being something like permission to be happy, or to live unburdened by the 

constant disapprobation of others.  

 

           In ante-bellum America, race was determined by a number of variables, 

depending on the state:  color, ancestry, ethnicity, association, behavior, property records. 

During the Jim Crow era, appearance became foregrounded as singularly important. 

Since the civil rights movement, class and speech have sometimes been included among 

the criteria of line-drawing. 

 

       In the industrialized west, racism (as well as related prejudices like class bias, 

sexism, and religious intolerance) is constructed from a complex intermingling of 

individual vision, historical happenstance, social milieu, political decision-making and 

legal structure.  If not actually rooted in biology, race is nevertheless the subject of 

relentless biologizing.  From the slavery-apologist Samuel Cartwright to Adolf Hitler, 

each generation has brought new utensils to the enterprise of racial demarcation:  calipers 

to measure the size of buttocks or length of leg muscles or circumference of skulls or 

width of noses.6  There have been mathematical models to measure percentages of 

“blood” or wavelengths of skin color or degrees of curvilinearity in the arcs of kinky hair.7  

But over and over, ra ce has been proved and proved again to be illusory as a matter of hard science.  

 

        Yet still the questions come:  If we are one species, what about sub-species? As in: 

“Blacks, Jews, Asians—you can’t deny they’re different.  It’s like a poodle or a 

dachshund or a St. Bernard is to the species of dog” according to one of my former 

students.   This sort of perception is a not a matter that will be resolved by yet more 

scientific testing. Rather, I think this reiterated resistance to data is testament to the 

persistence of human imagination.  That we still wonder if there aren’t significant 

disparities in human intelligence that might be logically tracked through the randomness 

that is race is testament to the power of belief over documentary evidence. 

 

       This infernal miasma invites a bit of consideration about the Manichean constructs of 

determinism and free will, mind and body, choice and constraint, illogic and sheer 

destiny.  Like Dostoevsky’s annoying man from the underground we must wonder:  Am I 

a mere piano key, an organ stop?  A mathematical inexorability, or a creation of my own 

intelligent design?  The more we tease this out, the more important becomes the narrative 

lens through which we seek our truths, and the more aware we become of humanity’s 

own constructive power. Am I three fifths of a human?  Ninety-six percent of a 

chimpanzee?  One hundred percent pure tragic mulatta?  One fourth of a nuclear family? 

An atomistic rational actor? A deficit expenditure of an impoverished underclass?  

 

       What, in other words, makes “race” both so dangerously essentialized as well as so 

fleetingly, maddeningly, beyond definitional containment?  

 

       Let’s begin with a story.  A few years ago, there was an article in the New York 

Times titled “DNA Tells Students They Aren’t Who They Thought,”8 about a sociology 

class at Pennsylvania State University. Sociology Professor Mark Shriver regularly 

administers DNA tests to students and has them analyzed for what the article calls 

“genetic ancestry.” Shriver is also a founding partner of the now-defunct company 

DNAPrint Genomics, which devised a test that “compares DNA with that of four parent 

populations, western European, west African, east Asian and indigenous American.”   

 

          The first indication that this was a more romantic than wholly rational enterprise 

is the classification of these as “parent” populations. The four categories are overly broad 

for purposes of meaningful ancestry-tracking, and unduly, randomly narrow in terms of 

geographic exclusivity.  Given the actual diversity of present-day American populations, 

the only logic behind this choice of the four groups is that it roughly segregates according 

to older anthropological descriptions of race-as-color:  white, black, yellow, red.  

 

           And indeed, that’s exactly what the students in Shriver’s class read into their test results. 

The article in the Times went on for three full columns discussing the degree to which the 

Penn State students were revealed to be “white” or “black.”  

 

          ”About half of the 100 students tested this semester were white,” according to an 

instructor. “And every one of them said, ‘Oh man I hope I’m part black,’ because it would 

upset their parents… People want to identify with this pop multiracial culture. They don’t 

want to live next to it, but they want to be part of it. It’s cool.”9  

 

          But the test purported to show (albeit flawed) geographic origins; it is interesting 

to see how quickly that was conflated with the matter of color and then from there into 

the politics of exoticized inclusion against a backdrop of ritual exclusion. 

 

      There is no allele for race, however. As a sociological matter, skin color is a 

presumptive indicator but historically it is not the exclusive marker.   And as a biological 

matter, melanin concentration merely reveals how one’s ancestors adapted to more or less 

sunny climates—and dark skin is more or less distributed around the equator, no matter 

which continent.  Similarly, evolutionary selection for sickle cell anemia, often 

mischaracterized as a “black” disease, is an inherited defensive response to having 

ancestors who lived among malarial mosquitoes.  

 

         That Shriver’s test could reveal ancestry based on broad migratory patterns over 

human history is not a surprise. Certain clusterings of genetic mutations over millennia 

occur more frequently among specific populations.   But those kinship populations cannot 

be scientifically correlated to the malleable social designations of race.  

 

          There is, nevertheless, a remarkable persistence in re-inscribing race onto the 

narrative of biological inheritance. This science is always pursued for only the noblest of 

reasons:  in Shriver’s instance, “the potential importance of racial or ethnic background to 

drug trials.”10 I will save for another paper my concern about the feckless commercial 

competition for “race-specific” medicines and suggest only that a more coherent 

enterprise might center on individualized genomic medicine rather than on the ever- 

changing political variables of racialized bodies.  

 

        For now, consider the description of one student who “discovered” she was “58 

percent European and 42 percent African.” The young woman “has always thought of 

herself as half black and half white because her mother is Irish-Lithuanian and her father 

West Indian.”11 Yet the “parent populations” tested for were described only as “western 

European” and “west African.” Lithuania is generally considered a part of Eastern 

Europe, and therefore not technically part of the population tested for. While “West 

Indian” is clearly used as a cipher for her African ancestry, one can be “white”–like 

Alexander Hamilton–while being West Indian. And the Irish were not considered white 

in colonial times. 

 

       Similarly, East Asians have gone in and out of being considered white in our history. 

South Asians, many being the closest descendants of the original “Aryans,” are generally 

not thought of as white in this country. Yet the incoherent use of Aryan is apparent in any 

dictionary, to wit, Webster’s: “1. Indo-European…. 2. Nordic… 3. Gentile….” 

 

       The degree to which these invisible habits of thought work despite us, or 

unintentionally, is perhaps evident in what the Irish-Lithuanian-West Indian student–the 

one who thought she was half and half–had to say about the test results: “I was surprised 

at how much European I was, because though my father’s family knows there is a great- 

great-grandfather who was Scottish, no one remembered him… I knew it was true, 

because I have dark relatives with blue eyes, but to bring it up a whole 8 percent, that was 

shocking to me.” What is remarkable—yet not uncommon as a cultural construct–is her 

flat conception of half and half ancestry, a kind of assumed “purity” of blackness and 

whiteness. One side had to be entirely African by her measure, one side entirely 

European. If she’s 58 percent European, she assumes the embodied 8 percent must be on 

the “black” side. The discussion never moves into the more difficult recognition that most 

West Indians probably have more than 8 percent European ancestry (but, like so many 

American families, hers might “know” but “not remember” the complicated, often 

clandestine couplings of the slave trade among Europeans, Africans and indigenous 

island peoples). It certainly does not seem to occur to anyone that her white parent might 

also have an African ancestor. 

 

       The jumble of who we are, particularly as residents of the New World, with its 

centuries of rapid, recent migrations, is not explored in the Times article. The single 

mention of migratory patterns is misleading: The students whose DNA revealed both 

African and European ancestors were described as “members of the fastest-growing 

ethnic grouping in the United States…mixed race.” But to the extent that a DNA swipe 

shows “mixing,” there is nothing “new” about it; our ancestors have been mixing it up 

since the first mothers left central Africa–in the long-ago, ancient sense, of course, we 

are all “African.”  

 

           Not only do genes not assign race, neither do they have anything to say about the 

cultural practices we usually refer to as ethnicity or identity.  The absurdity of thinking 

otherwise is highlighted by one of the Penn State students, a warm-brown-colored young 

man pictured in cornrows, who said that even though he tested at “48 percent European” 

he values his blackness, since “both my parents are black.” He went on to muse: “Just 

because I found out I’m white, I’m not going to act white.” The article ended with an 

observation that “whatever his genes say,” the young man will likely always “be seen as 

black–at least by white Americans.”  

 

         Consider the narratives therein: Genes “speak” race; whiteness is a biological 

inheritance that can be consciously “acted”; blackness is defined by the eye of the white 

beholder. 

 

       If history has shown us anything, it’s that race is contradictory and unstable. Yet our 

linguistically embedded notions of race seem to be on the verge of transposing 

themselves yet again into a context where genetic percentages act as the ciphers for 

culture and status, as well as economic and political attributes. In another generation or 

two, the privileges of whiteness may indeed be extended to those who are “half” this or 

that.  Indeed, some of the discussions about candidate Barack Obama’s “biracialism” 

seemed to invite precisely such an interpretation. Let us not mistake it for anything like 

progress, however: biracialism always has a short shelf life, and by the time he was 

elected, President Obama not our first “half and half president” but had become all 

African-American all the time.  Indeed, Obama himself seemed to acknowledge the more 

complex reality of his own lineage in an off-the-cuff aside, when, speaking about his 

daughters’ search for a puppy, he observed that most shelter dogs are “mutts like me.” 

 

          In fact, of course, we’re all mutts. And as Americans, we’ve been mixing it up 

faster and more thoroughly than anyplace on earth. At the same time, we live in a state of 

tremendous denial about the rambunctiousness of our recent lineage. The language by 

which we assign racial category narrows or expands our perception of who is more like 

whom, tells us who can be considered marriageable or untouchable. The habit of burying 

the relentlessly polyglot nature of our American identity renders us blind to how 

intimately we are tied as kin, as family, and as intimates. 

 

           In the United States’ vexed history of color-consciousness, anti-miscegenation 

laws (the last of which were struck down only in 1967) enshrined the notion of 

hypodescent. Hypodescent is a cultural phenomenon whereby the child of parents who 

come from differing social classes will be assigned the status of the parent with the lower 

standing. There are many forms—most parts of the Deep South adhered to it with great 

rigidity, in what is commonly called the “one drop and you’re black” rule. Take for 

example, New York Times editor Anatole Broyard, who denied any relation to his darker- 

skinned siblings and “passed” for most of his adult life: there were many who expressed 

shock when it was uncovered that he was “really” black. Some states, like Louisiana, 

practiced a more gradated form of hypodescent, indicating hierarchies of status with 

vocabulary like “mulatto,” “quadroon,” and “octaroon.” And even today, and despite our 

diasporic, fragmented, postmodern cosmopolitanism, there is a thoughtless or 

unconscious tendency to preserve these taxonomies, no matter how incoherent. Consider 

Essie Mae Washington-Williams, the daughter Senator Strom Thurmond had by his 

family’s black maid. She lived her life as a “Negro,” then as an “African American,” and 

attended an “all-black” college. But in her 70s, when Thurmond’s paternity became 

publicized, she was suddenly redesignated “biracial.” Tiger Woods and Kimora Lee 

Simmons are alternatively thought of as African-American or “biracial,” but rarely as 

“Asian-American.” 

 

          In contrast, many parts of Latin America, like Brazil or Mexico, assign race by 

the opposite process, hyperdescent. That’s when those with any ancestry of the dominant 

social group, such as European, identify themselves as European or white, when they 

may also have African or Indian parents. As more Latinos have become citizens of the 

United States, we have interesting examples of this cultural cognitive dissonance: Just 

think about Beyoncé Knowles and Jennifer Lopez. Phenotypically they look very, very 

similar. Yet Knowles is generally referred to as black or African-American; Lopez is 

generally thought of as white (particularly among her Latino fan base) or Latina (among 

the rest of us), but she is never called black or even biracial. 

 

         Among Native Americans in the United States there is a combination of both 

hypo- and hyperdescent, encouraged by the interventionist history of the Bureau of 

Indian Affairs. Anita Hill, for example, is part Creek, but the narrative about her is 

entirely about African-American origin. And membership in many tribes remains closed 

to those who have any discernable mixture of African ancestry, but not to those with 

European ancestry. 

 

           The New York Post regularly offers up fascinating tabloid renderings of these 

contradictions in our culture. When Angelina Jolie adopted her son Pax from Vietnam, 

the Post featured a breathless front page story, complete with what was described as “a 

stunning mother-child portrait” of the two.12  Their faces were aglow with interracial 

bliss. 

 

          But the lower half of that day’s very same front page was given over to a second, 

more somber story.  Entitled “Baby Bungle: White Folks’ Black Child,” it trumpeted “a 

Park Avenue fertility clinic’s blunder” that “left a family devastated–after a black baby 

was born to a Hispanic woman and her white husband.”  Long Islanders Nancy and 

Thomas Andrews had had trouble conceiving after the birth of their first daughter. They 

employed in vitro fertilization and baby Jessica was born. Jessica is darker skinned than 

either of the Andrewses, a condition their obstetrician initially called an “abnormality.” 

She’ll “lighten up,” said that good doctor. Subsequent paternity tests showed that Nancy’s 

egg was fertilized by sperm other than Tom’s. The couple sued. 

 

         If this were the end, the story might simply fall within the growing body of other 

technological mix-ups resulting in what are sometimes called “wrongful birth” suits, for 

lost eggs, failed vasectomies, malpractice, broken contract and so on. There is, after all, a 

legally recognized expectation that a certain standard of care will be observed in the 

handling of genetic material.  

 

          What was distinctive about the Andrews case was that the parents also tried to cite 

(ultimately without success) Jessica’s pain and suffering for having to endure life as a 

black person. The Andrewses expressed concern that Jessica “may be subjected to 

physical and emotional illness as a result of not being the same race as her parents and 

siblings.” They were “distressed” that she is “not even the same race, nationality, 

color…as they are.” They described Jessica’s conception as a “mishap” so “unimaginable” 

that they had not told many of their relatives. (Telling the tabloids all about it must have 

come easier.) “We fear that our daughter will be the object of scorn and ridicule by other 

children,” the couple said, because Jessica has “characteristics more typical of African or 

African-American descent.” So “while we love Baby Jessica as our own, we are reminded 

of this terrible mistake each and every time we look at her…each and every time we 

appear in public.” 

 

          One wonders what this construction of affairs will do to Jessica when she is old 

enough to understand. But here’s the really interesting part. When I turned to other media 

accounts I found a picture of the family–from a 2006 greeting card, no less.13 And Jessica

looks exactly like her mother and elder sister. It is true that Jessica is slightly 

darker than her mother and that her hair is curlier than her sister’s, but all three females 

are pretty clearly African-descended. As one of my students put it, if anything it is the 

paleness of the father’s skin that marks him as the “different” one. 

 

           The picture underscored the embedded cultural oddities of this case, the invisibly 

shifting boundaries of how we see race, extend intimacy, name “difference.” According 

to The Post, Ms. Andrews was “Hispanic” and apparently, by the Post’s calculations, one 

Hispanic woman plus one white man must equal “a white couple.” The mother is “a light- 

skinned native of the Dominican Republic,” which seemed to indicate that while she may 

not be “white,” she’s also not “black.”  

 

          No matter which of many media accounts I looked at, each narrative implied that 

if the correct sperm had been used, the Andrewses would have been guaranteed a lighter- 

skinned child. But as most Dominicans trace their heritage to some mixture of African 

slaves, indigenous islanders and European settlers, and as dark skin color is a dominant 

trait, it could be that the true sperm donor is as “white” as Mr. Andrews. But that 

possibility is exiled from the word boxes that contain this child. Not only was Jessica 

viewed as being of a race apart from either of her parents; she was even designated a 

different nationality–this latter most startling for its blood-line configuration of 

citizenship itself.  According to this logic, discrimination is no longer a social problem 

that implicates all of us and our institutions as unloving or under-inclusive. 

Discrimination becomes destiny, the normative response to biologized “abnormality.” 

Racial constructions not only oppress by normalizing inequality, they can also 

make the lie of race seem liberating, attractive, romantic.

 

           A small digression to clarify what I mean:  a few years ago, there was an interesting convergence of inquiries into the nature of truth. James Frey published his book A Million Little Pieces, a wholly fictional account that he proffered as personal memoir.  When the fraud was discovered, he defended himself saying that the book was concerned with “emotional truth” rather than literal truth.  This triggered deep epistemological soul-searching about whether simple 

lies can signify, represent, or constitute any kind of figurative truth at all. After a swirl of 

media confusion, a sound tongue-lashing from Oprah Winfrey seemed to seal up the 

answer as a resounding Not On My Dime. 

 

           At the same time that Frey’s soap opera was playing itself out, researchers in 

France were searching for any charred relics at the site where Joan of Arc was said to 

have been burned at the stake. They wanted to subject any putative remains to DNA 

testing. Why one would want to do this became something of an issue in the European 

media: She didn’t have children, the site of her martyrdom is in dispute, and the 

legitimacy of any so-called relic would be highly contested. But the pursuit of “the truth” 

in so attenuated a context raised questions about the hunger for certainty in the face of 

such uncertainty. What are the limits of historical insight? How many graves shall we dig 

up to settle old scores? What are the possibilities of knowing absolutely? 

 

          At the same time, there was a similar pursuit unfolding in the American media.   

Harvard Professor Henry Louis Gates was hosting a series exploring his roots and those 

of a handful of other prominent African-American figures, including comedians Chris 

Tucker and Whoopi Goldberg, scholar Sarah Lawrence-Lightfoot and, of course, Oprah 

Winfrey. It was a fascinating series of TV programs, particularly from the perspective of 

the discipline of history. It revealed the peculiar difficulties of tracking lines of descent 

through slavery–the sales of human beings that acknowledged no family ties, the absence 

of last names, the absence of first names in some cases and the necessity of consulting 

not just census records but also “the master’s” property holdings for listings of possible 

relatives. The reconstruction of family history was like an archeological dig, part 

intergenerational storytelling, part study of migratory patterns, part recovery of 

commercial transactions, and part science. 

 

           The science du jour is, of course, DNA testing. On the one hand, DNA testing can 

be quite useful in establishing certain kinds of family relation. (Since the program aired, 

Gates has set up his own ancestry-tracking company, AfricanDNA.)  Gates’ own test 

results showed that he had no relation to Samuel Brady, the white patriarch he’d grown 

up “knowing” as the man who impregnated his great-great-grandmother. Nothing had 

prepared him for Brady’s not being his direct ancestor. Indeed, one of Gates’s cousins 

remained adamant that the test must be wrong. If the test was right, he insisted, there 

would have to be “two truths”: One would be the story he grew up with, the other what 

the DNA says. 

 

           Somewhere in between what the DNA says and what shaped the family account is 

a gap that is something like a lie. A secret passing from black to white? An act of 

assimilation or aspiration? A myth to hide some shame, some rape? A change of identity 

to escape to freedom? Yet I do hesitate to think of it as precisely on the same moral level 

as the kind of “lie” that James Frey is said to have told in his book. There is something 

very human about the repetition of family stories until they become epic rather than 

literal, the burying of family secrets, the lying of ancestors, the reinventions of migrants, 

the accommodations of raw ambition, the insulations from terrible shame. This is, I 

suppose, distantly related to James Frey’s addled manipulations; it might also be related 

to, but of a different order than, the magical thinking of mental patients or character- 

disordered people or victims of great trauma.  

 

           There is something so commonplace about the kinds of family mysteries that 

Gates’ inquiries reveal–particularly in the American context. It is part of how many, 

many of our ancestors, regardless of where they came from, reinvented themselves in the 

New World. New York University Law School Professor Jessie Allen describes the 

“magic” of legal remediation as follows: “What ought to have been prevails over the 

past.” Family stories ritualize the past in a very similar way. It is part of what Professor 

Robert Pollack, head of Columbia University’s Center for the Study of Science and 

Religion, calls the “eschatology of repair.” 

 

            If there is value to this kind of “emotional truth”–if I can be permitted that term– 

it is important not to confuse it with the sort of truth that DNA tells us. So while DNA 

can undoubtedly pinpoint certain aspects of our ancestry through sequencing and 

matching mitochondrial DNA, it does not make literal sense to say, as Gates did to Oprah 

Winfrey at one point: “You’ve got education in your genes.” Of course, he was speaking 

metaphorically at that moment, using the human genome as a metaphor for a pattern of 

socialization, a family habit, a thirst for knowledge modeled by parents.  

 

          But at other points in the program as well as in our daily parlance, that metaphoric 

dimension is applied rather more carelessly–and more dangerously. We have a long 

history of thinking of identity as genetically based, but again, there is no more an allele 

for being “white” or “Latina” than there is for “education.” These are malleable political 

designations that expand and contract with time and human circumstance.  

 

          It behooves us to be less romantic about what all this DNA swabbing reveals. I 

worry about the craving to “go back to Africa,” to “connect with our Yiddishkeit” or to 

feel like new doors have been opened if we have an Asian ancestor. The craving, the 

connection, the newness of those doors is in our heads, not in our mitochondria. It is a 

process of superimposing the identities with which we were raised upon the culturally 

embedded, socially constructed imaginings about “the Other” we could be. The fabulous 

nature of what is imagined can be liberating, invigorating–but it is fable. If we read that 

story into the eternity of our blood lines, if we biologize our history, we will forever be 

less than we could be. 

 

References 

 

1 

 For a history of ante-bellum litigation about what constituted “whiteness,” see Ariella 

Gross,  What Blood Won’t Tell: Racial Identity on Trial in America, (Harvard Press, 

2008) 

2 

 Brown, Melissa, “On Becoming Chinese,” in Melissa J> Brown (Ed.) NEGOtiating 

Ethnicities in China and Taiwan, (University of California Press, 1996) 

3 

 Gilman, Sander, Making the Body Beautiful:  A Cultural History of Esthetic Surgery, 

(Princeton University Press, 1999) 

4 

 Samaddara and Shah,  Dalit Identity and Politics (Sage Publications, 2001) 

5 

 Gilman, Sander, The Jew’s Body (Routledge Press, 1991) 

6 

 For an excellent compendium of such experiments, see Harriet Washington, Medical 

Apartheid:  The Dark History of Medical Experimentation on Black Americans From 

Colonial Times to The Present (Doubleday, 2006) 

7 

 Ibid 

8 

 Daly, “DNA Tells Students They Aren’t Who They Thought,” New York Times, April 

13, 2005 

9 

 Id. 

10 

 Id. 

11 

 Id. 

1 

1 

  

2 

 “Title,” New York Post,  March 22, 2007 

3 

 The Daily News 

 

DNA and Innocence

The Talking Helix

by PATRICIA J. WILLIAMS

 

June 23, 2009

Johnnie Earl Lindsey spent twenty-six years in prison for a rape he did not commit. He was convicted based on the victim’s misidentification of him from a photograph shown to her a year after the crime occurred. The jury found her perception more credible than the word of Lindsey’s supervisor, who had testified that Lindsey had been at work at the time of the assault.

 

Today’s extremely precise technologies for analyzing DNA were not dreamed of two decades ago, when Lindsey was arrested and tried. By ordinary measures, therefore, he had had his day in court. The victim asserted his guilt; he asserted his innocence; a jury of their peers believed that her story was true beyond any reasonable doubt. As a formal matter, the conviction withstands the requirements of due process, no reason to look back.

 

Luckily, Johnnie Earl Lindsey’s case fell within the jurisdiction of Dallas County District Attorney Craig Watkins. Watkins, who in 2008 became Dallas’s first black district attorney, inaugurated a unit within his office in conjunction with the Innocence Project of Texas to re-examine the forensic material in closed cases using improved methods of DNA analysis. The results have been nothing short of stunning: of forty cases reviewed, almost half have ended with complete exoneration of the men originally convicted–nineteen men who lost an average of twenty years each while wrongly imprisoned.

Nationwide, the Innocence Project has facilitated 240 post-conviction exonerations, seventeen of which were of death row inmates. Perhaps the most famous reversal was that of the young men so noisily and ultimately wrongly convicted in the Central Park Jogger case. But outside Dallas County, most of these successes have been the result of individual convicts mounting numerous appeals to have the evidence against them reopened. Craig Watkins’s program in Dallas suggests that the overall numbers would be even more staggeringly high if prosecutors in all states took it upon themselves to test available DNA samples from old or suspect cases.

Indeed, in recognition of the probative value of this new technology, all states now admit DNA testing at trial; and all but three states honor requests for some form of post-conviction testing. If the end of our justice system is the protection of all of us through the restraint and detention of actually dangerous people, then the potential accuracy of DNA testing is an opportunity to be embraced and enlarged.

But last week, in the case of District Attorney’s Office for the Third Judicial District v. Osborne, the US Supreme Court’s conservative majority marched stolidly backward in time, ruling that there is no constitutional right to post-conviction analysis of DNA samples. The facts of the case unfolded in Alaska, one of those three states where post-conviction DNA testing remains a matter of prosecutorial and judicial discretion. In 1993, one William Osborne was convicted of kidnapping and sexually assaulting a prostitute on the outskirts of Anchorage. The victim identified Osborne “with some uncertainty,” from a photograph and again at trial. The condom used in the rape was found at the scene, but was not tested for a match using the most precise DNA technology of the time. Osborne maintains that he requested that it be so tested and that the results be presented at trial; but apparently his defense counsel believed he was guilty and thought it better not to conduct such a test as a tactical matter. So no such request was presented to the trial court.

The condom was preserved, however, and is still in the possession of the district attorney’s office. Osborne, now having served nearly sixteen years, sued to have the semen in the condom analyzed at his own expense. On June 18, 2009, however, the Supreme Court of the United States held that he had no right to a new test–or as Justice Alito’s concurrence bluntly expressed it, no “right to rummage through the State’s genetic-evidence locker.”

How can this be? To most lay people, the merits of permitting such testing seem clear. To understand the Supreme Court’s reasoning requires some understanding of how much the Roberts-led majority adheres to formal devices and cost-benefit analysis, even if the results remain substantively suspect.

First of all, it must be acknowledged that statistics regarding DNA exoneration represent a profound challenge to the legitimacy of our entire criminal justice system. If nearly 50 percent of convictions are shown to be in error–in one jurisdiction alone–then why wouldn’t a coin-toss be better than the expense of the trial process? I daresay most of us would agree that this mockery of the Constitution’s most cherished liberty interest urgently requires a top-to-bottom examination of the entire system–as a constitutional matter in the courts, but also requiring political and legislative evaluation of police investigative techniques, the adequacy of defense counsel, the ethics of prosecutors, the notoriously inaccurate and suggestible recollections of stressed eyewitnesses, and the relative carelessness in handling forensic material, to say nothing of the prejudicial influence of tabloid media upon juries.

In the face of such a rapidly unfolding landscape, the Roberts opinion responds by passing on any constitutional oversight of this quintessentially juridical quandary. Instead, the majority posits its expressed preference for letting the “elected governments of the States…[confront] the challenges DNA technology poses to our criminal justice systems and our traditional notions of finality, as well as the opportunities it affords.”

Noam Biale, a writer with the ACLU’s program on technology and liberty, worries that this language effectively buries any chance of a coherent response to the problem: “While couched in a reluctance to ‘short-circuit what looks to be a prompt and considered legislative response to new technology, the disparate impact this will have on criminal defendants is well illustrated by the Alabama Legislature’s recent passage of a bill that severely restricts access to dna testing for individuals convicted of capital offenses.” (Yet even as the law would restrict access for those whose fates are most in the balance, the bill also mandates the state’s DNA collection from anyone, including juveniles, arrested for a felony, thus increasing and hoarding the inaccessible stock of the state’s impenetrable “genetic evidence locker.”)

Secondly, reopening old cases is normally predicated on “new evidence.” Although it might seem a technicality to some, improved technological means of interpreting long-stored samples of semen or blood do not literally make those samples “new evidence.” Still, one may wonder why we shouldn’t simply concede that extracting new information from old data amounts more or less the same thing. But retrospectivity of any sort is not easily embraced by our justice system, double jeopardy being the least of it. The rule permitting re-examination of “new evidence” is accompanied by a very high standard for showing materiality, and generally assumes the rarity of such post hoc discovery.

DNA analysis, by contrast, conceivably opens the door to re-examining hundreds of thousands of cases. And the Roberts opinion explicitly shies away from the “costs” associated with constitutionalizing DNA access on a broad scale: “We would soon have to decide if there is a constitutional obligation to preserve forensic evidence that might later be tested…. If so, for how long? Would it be different for different types of evidence? Would the State also have some obligation to gather such evidence in the first place? How much, and when?” The majority opinion dismisses such concerns as policy issues that courts should not be deciding. And Alito’s concurrence laments the economic costs of DNA analysis even more specifically, citing the “severe backlogs in state crime labs across the country.” But even the substance of this latter point is contentious: while there may be backlogs in many generally underfunded forensic labs, that stress has little to do with post-conviction dna requests. Stephen Saloom, policy director for the Innocence Project, points out that forty-seven states have such laws with little indication of “floods of litigation’ or inappropriate costs related thereto. Therefore, Alito’s concern would seem to be a red herring.

Fourthly, the Roberts court expresses both naïveté and alarming cynicism about the proper function of both defense counsel and prosecutors. The ethical responsibility of a prosecutor is not only to prove the guilt of a defendant beyond a reasonable doubt, it is also to provide access to materially exculpatory evidence at any stage. In the Osborne case, the victim claimed that only one man raped her. If Osborne’s DNA were ruled out as that in the condom, it would be pretty definitively and materially exculpatory. But it is hard to extract that responsibility from Alito’s image of an ironclad “locker” of genetic property presumptively belonging to the State of Alaska and Alaska alone, figured as though it must be guarded from the random “rummaging” of convicts who just want to “play games” with the system. “The procedures that the state labs use to handle these hundreds of thousands of DNA samples provide fertile ground for litigation,” Alito complains.

Similarly, the role of a defense attorney is not only to put the prosecution to its burden of proof but also to be a responsible spokesperson or “mouthpiece” for the wishes of the defendant. In this case, Osborne’s attorney made a tactical decision not to request a DNA analysis at the time of trial, despite Osborne’s contention that he requested the same. The attorney’s failure to make a request on the record at the time of trial is held against Osborne in his seeking the test post-conviction. In a footnote, Roberts passes over the problem as follows: “Given the reasonableness of trial counsel’s judgment, the state court held that respondent’s protestations (whether or not he made them) were irrelevant.” Justice Alito seems even less inclined to respect counsel’s responsibility to zealously represent the interests of her client, implying that resources are just plain wasted when “no detail of laboratory operation, no matter how minute, is exempt as a potential point on which a defense attorney will question the DNA evidence.”

We are undeniably in the midst of a scientific revolution. DNA, properly handled, allows us to collapse time, to peek into the past with more accuracy than virtually any other tool. By the same token, improperly handled, corrupted DNA samples have singular power to implicate the innocent. For example, European police spent years trying to track down a mysterious female “serial killer” whose DNA showed up at murder scenes across France, Spain and Switzerland. None of the crimes seemed related but for the presence of the mystery woman’s genetic print. Finally, it was discovered that the DNA belonged to a sloppy German assistant who worked in the lab where police sampling kits were produced.

For another example of the risks of misreading what DNA can tell us, one need do no more than return to the Osborne case. Justice Roberts refers to the fact that at the time of Osborne’s trial–some sixteen years ago, when testing was much more primitive than now–the state of Alaska performed “DQ Alpha” testing, an older, “relatively inexact” form of DNA test. Not only has this earlier test since been supplanted by the indisputedly more accurate “STR” test that Osborne is presently seeking, but DQ Alpha was not nearly as discriminating as the then-available so-called “RFLP” test that Osborne had asked his attorney to seek. Osborne also sought mitochondrial DNA testing of pubic hairs found at the scene, mitochondrial data being far more accurate than the visual examination to which the state’s expert witness subjected the hairs.

Yet Justice Roberts refers to the results of that outdated DQ Alpha test as though it were dispositive: “The semen found on the condom had a genotype that matched a blood sample taken from Osborne, but not ones from Jackson, K. G., or a third suspect named James Hunter. Osborne is black (as were all the suspects), and approximately 16% of black individuals have such a genotype. In other words, the testing ruled out Jackson and Hunter as possible sources of the semen, and also ruled out over 80% of other black individuals. The State also examined some pubic hairs found at the scene of the crime, which were not susceptible to DQ Alpha testing, but which state witnesses attested to be similar to Osborne’s.”

Worst of all, however, is the opinion’s casual implication that DNA can reveal “race.” DNA can reveal direct family relationship; it can reveal broad migratory patterns in human history. What it cannot do is reveal race; race is an incoherent social construct defined by malleable, ever-changing social and cultural perceptions rather than by biological phenomena. Furthermore, the data cited by the court assumes a neat biological distinction between “black” and “non-black.” In other words, using racial taxonomies to read DNA results ignores the reality that–particularly in the miscegenous melting pot of the United States–many people who look, and even identify themselves as, “white” or “Hispanic” or “Asian” could also have a recent West African ancestor. What’s missing from the primitive interpretations to which Roberts refers is any analysis of how “black” was defined; or how large the sample set was from which such a statistic was drawn; or what the frequency of that genotype might be in so-called “white” or other socially defined ethnic groups. Indeed, the use of racial category in this particular kind of DNA analysis has been rejected as unscientific time and again by the National Institutes of Health’s consideration of the ethical, legal and social implications of the Human Genome Project; as well as in refereed journals like Science, the magazine of the American Association for the Advancement of Science.

In sum, the importance of this new technology begs for unprecedented investment in the upgrading of labs, in maintaining the security of collection methods and in the integrity of its interpretation. The truth that DNA evidence offers us should also give us pause about other, non-forensic failings of justice. Johnnie Earl Lindsey, for example, refused ever to waiver in maintaining his innocence. As a result, he was denied parole repeatedly. He explains that in order to make parole you have to express remorse, and remorse is considered the equivalent of a confession. Unlike Lindsey, Osborne did confess–in order, he says, to be granted parole. That confession is one reason Alaska has refused to permit him access to the condom. Similarly, many of the people subsequently exonerated by DNA had confessed to crimes they didn’t commit, almost always in return for the promise of a more lenient sentence, as with the Central Park Jogger defendants, or in order to be eligible for parole. The lesson we must take from this is that the methods by which police, prison guards and parole boards extract confessions must also be thoroughly scrutinized.

For those interested in supporting these and other efforts at reform, you may donate to the Innocence Project by visiting its website. It also sponsors local projects all over the country, for which volunteer opportunities abound. (See the section on the website titled “What Can I Do?” For more information about Dallas District Attorney Craig Watkins, you can go to the website of the Discovery Channel’s series chronicling of that office’s work, “Dallas DNA.”

For some lucid summaries about the misuse of racial category in DNA analysis, a good place to start would be “Race and Reification in Science,” in the February 2005 volume of Science magazine, written by Troy Duster, director of NYU’s Institute for the History of the Production of Knowledge; or medical anthropologist Duana Fullwiley’s article, “The Biologistical Construction of Race: ‘Admixture’ Technology and the New Genetic Medicine,” in volume 38 of the journal Social Studies of Science, 2008. See also, “Among Many Peoples, Little Genomic Diversity,” in the June 22, 2009, edition of the Washington Post. And for the more scientifically inclined, see “The Role of Geography in Human Adaptation,” by Coop, Pickrell, et al., in volume 5 of PLoS Genetics, June, 2009. And the forthcoming (July/August) issue of Genewatch, the magazine of the Council for Responsible Genetics, will devote its entire issue to “Genetics And Race: Past Abuses, Present Prospects And Future Solutions.”

Finally, the bittersweet, nearly ignored after-life of the young men accused in the Central Park Jogger case will be the subject of a book and a PBS series by Ken Burns and his daughter Sarah Burns, probably out sometime next year.