Remarks by Patricia Williams

Remarks by Patricia Williams

Closing Reflection

What an extraordinary gathering. I am grateful to the organizers for the thought that has gone into making this such a success. It's a privilege to be here and to have the opportunity to offer these remarks summarizing the work of the last few days.

Through the lens of my discipline, which is law, I was struck by three general problems for takeaway and reflection: first, various forms of intentional and negligent misrepresentation; second, the "framing" or epistemic problem; and third, the problem of translation among languages, cultures and disciplines.

First, there is the problem of misrepresentation, and by that I mean to include the subtlest forms of wrong-headed figuration, such as superstition, appeals to faith, and magical thinking. An anecdote to illustrate the scope of the problem: I began my career as a consumer advocate, specializing in health law, in particular the buying and selling of purported medicines that made false claims. My favorite was a supposed cancer cure that was a salve made from the ash of Mt. Helen's then-recent volcanic eruption.

It was a rather charming product, if in a medieval way—marketed as though it were akin to a pilgrimage to Lourdes, or a dip in the Ganges or a bottle of water from the River Jordan.

This particular case was lots of fun to prosecute because the purveyors were unrepentant out-and-out charlatans, and we on the consumer protection side of things could roll our eyes about it and laugh, largely because it wasn't backed up by a major religious belief system. The prosecution of these characters didn't offend anyone. All their victims were true victims; no one had been saved, only harmed. You didn't have to deal with the testimony of those who professed miracles.

Yet when I look at what's happening with the technologies we came here to consider, I believe that we are faced with misrepresentation no less insidious than the promise of a Mt. Helen cancer cure revealed as ashes. What's more, so many of these technologies do have real effect, some for good and some for potential ill. So the sense of promise is not without foundation. Yet the very truth of that promise simultaneously gives rise to faith, exuberant hope, and ultimately a tenacious belief that we are on the verge of the miraculous. Thus, the prosecution and weeding out of charlatanism presents against a much cloudier field than that of Mt. Helen's ash.

The precise actualization of technological and medical promise is largely still unfolding, still speculative. Keeping representations of genomic science accurate requires containing, somewhat, an exuberance of optimism and speculation. That speculation is too often captured in Faustian bargains with the gods of lucre; it tempts and corrupts through rank conflicts of interest.

Moreover, the potentialities of genetic knowledge are not just the objects of economic speculation--as in venture capital investment and patenting--they are also the objects of endless romantic confabulation and hyperbole.

Some of this romantic fictionalizing is easily enough categorized as just plain old-fashioned false advertising. As a cause of action, false advertising encompasses not merely outright lies and mislabeling, but also what's called undue "puffery" or exaggeration—and with billions of dollars of pharmaceutical money on the line, these days there's a whole lot of genomic puffery going on.

At the same time, not all of this may be completely intentional—again, the excitement about promised results feeds a kind of reckless emotionalism. Many researchers, university administrators, venture capitalists, being human, just want to believe in gold coins showering from heaven; whether they always realize it or not, many are engaged in passionate prayer to the great spirits of profit, funding, equity, fame.

Another aspect of misrepresentation has to do with misaligned methodologies. For example, the use of differing statistical models to analyze risk of disease are of prime concern in the General Accounting Office's report of July , 2010, as well as the prevalence of inconsistent methods of calculating matches in forensic DNA matching, whether through "cold hits" or familial tracking. These need coordination and examination. Their coordination is an urgent matter because law and public policy are acting upon misinformation, and structuring responses and interventions premised on uncertainties and falsehoods.

The acting upon genomic promise before definitive results is an extremely troubling phenomenon. The most familiar example is that of the many misnomers for MAO-A, the so-called "gene for aggression," also variously known as "the warrior gene," "the gangsta gene," "the gambling gene" and the gene for losing one's virginity before marriage. However much the actual data--still to be confirmed by better control studies—seems to underscore a correlation between environment and social outcome, MAO-A has been compressed to an essentialized, innate, reductio ad absurdum. In murder trials, defendants attempt to proffer it as a reason to mitigate sentencing; by contrast, prosecutors and policy makers have attempted to deploy it as reason for increased sentencing and social intervention. Depending on the jurisdiction, courts have responded to arguments about MAO-A by both shortening and lengthening sentences.

Finally, one of the most common and most dangerous misrepresentations about DNA is the wide-spread popular belief that it is infallible. We must all be concerned about the impact that the myth of infallibility of genetic technology is already having in shaping policy and law.

The second area of concern is the epistemic one, including issues of cognitive dissonance—what we have variously discussed as the "framing" or "perceptual lens" or "pathway problem."

A second story to illustrate this second area: Back in the very early days of IVF, Rebecca Mead wrote an article entitled "Eggs For Sale," in the New Yorker Magazine of August, --- 1999. It told of a young woman enrolled at Columbia University Law School—my fair institution—who had broken a record in terms of price reaped from the harvest of her eggs. It was a young woman whom Mead called "Cindy," who had answered an ad for "Ivy League Eggs"—that is to say, the "producer" thereof had to be enrolled at an Ivy League institution; stand at least [5'10"?]; be fair-haired; have blue or green-eyes; have combined scores of at least [1400,?]; and be endowed with a good family health history. Cindy had been paid [$50,000?] for the same, a price that, more than a decade later, is now the base line for many students at top-ranked universities.

But I had the privileged and quite interesting experience of having had Cindy in my class on Law, Politics and Social Justice at the time the article came out. I would never have connected Rebecca Mead's article to this particular young woman, had Cindy herself not volunteered the information in class.

At this point in the narrative, I'd like to make a short digression and ask you to summon a mental image of Cindy. In fact, if you would, pick up an actual writing or drawing instrument and make a picture of who you imagine Jane to be. What does she look like? Where does she come from? Would you be able to pick her out of a crowd of Columbia law students, etc. Click on an image in your head, in other words, and hang onto it as I pick up where I left off.

You see, Cindy did stand out among my students, if not for academic reasons alone. She was an excellent student, of course. And, as contracted-for, she was tall, fair and of an enviably athletic build. In addition, however, the promised blonde hair had been dyed purple and was twisted into long dreadlocks. Her skin was tattooed with engaging nests of writhing snakes. And she had an unusual number of piercings on the visible parts of her body, which visible parts included her navel.

Cindy was a standout in other ways as well: in her late twenties, she was a bit older than most law students. She had been an abused woman, and was an activist on behalf of funding more halfway homes and for the rights of prostitutes and homeless young people. All round, she was one of the most eloquent advocates I've ever had the pleasure of knowing. She was not the usual admit to Columbia Law School, but then she was, as promised, smart as whip, and also had a masters degree in anthropology.

Cindy considered herself a full agent, a controller of her own body, and so she sold her eggs much more frequently than was medically recommended and ended up missing a good deal of school when laid low by a serious infection as a result. But she got what she wanted, which was the ability to pay her way through Columbia and out of penury (and, at those prices, perhaps put aside some for a condo in Manhattan). In any event, she received a law degree in return; and she was able to leverage that knowledge into all sorts of benefits for the cause and the constituents for whom she still works.

Yet I still have problems with the individualized, rational actor, economic agent story line by which she lived. First, I worry that selling one's body or body parts in exchange for and education that will help you rescue other women who are selling their bodies or whose bodily integrity has been violated is a very complicated conceptual phenomenon.

Second, I'm pretty sure she wasn't the package that the egg purchasers or putative parents had in mind; and if you go back to the image of Cindy you might have drawn from her clinical profile and compare it to the embodied Cindy, well the great distance between image and actual expression--genetic, environmental or otherwise--well the gulf is particularly vivid and vividly ironic.

Third, Cindy's best friend was a young black law student, and she had all the attributes Cindy had, but for the blond hair and blue eyes. She too would have liked to sell her eggs to put herself through law school, but there were no takers, so she was busy filling out the forms for scholarships and loans. This part of the story should raise a cautionary flag for all of us: When we discuss either American culture as "everybody"; or a younger generation within Western culture as "all seduced" by the joys of self-commodification, let's be aware that that kind of generalization is premised on the continued invisibility of certain actors or certain groups who are not considered to be of value in the market. And that exclusion, whether de jure or de facto, describes a wall around the reproductive festivity, an invisible sieve whose porousness is only transgressed by those who possess the valued beauties of a given temporal era or a given culture or a given physical specification.

All this indicts the players who tell themselves that it's all about mere personal preference and improved options and freedom of market choice—and simultaneously that it is all about donation and altruism and generosity and helping those who desperately want children, family, love, love, love. The bottom line is that these players don't want children. They—or we-- want socially acceptable children. They want perfect children. They don't just want intelligent children—or my black law student would have had egg-seekers lining up for her eggs. They want racialized children. They don't just want healthy children, or they wouldn't be insisting on tall or 5'10" eggs. They want willowy, toweringly, supra-height-normative children.

This much is an invidiously invisible component of what so many purchasers seek in this market for a "child we can love." Someone at one of the sessions was saying that no one seriously endorses human cloning anymore. Well, if so, I think that's not because cloning is difficult or necessarily rejected as immoral. I think it's because no one needs cloning anymore—we're too busy creating children who are better than the chance-y creatures who are their forebears. New reproductive technology is no longer about reproduction in the literal "perfect copy" sense: it's about art, crafting something bigger and taller and better and more foolproof, guaranteed to sail into the best pre-schools, through the best colleges, and the ultimate country club…This isn't a new impulse of course. If that worked, the royal family of Britain would all be beautiful geniuses. But like the well-monitored breeding of royal lineages, it is, to very great degree, about retaining material power through notions of inherent superiority, often with progeny as the crucible of that sense of superiority.

In stating it this way, I mean to implicate overtones of entitlement, for this is an old story whose structure is at the root of our most insidious –isms: nativism, narcissism, class bias, racism, Big Brotherism, colonialism, etc. And all this is not just a eugenic or class worry; it's a problem for family life. When you've paid 50 or 100 thousand dollars for a perfect egg that is Ivy League guaranteed and supposedly had "the gene" for violin—well when the child comes out petulant and dyspeptic and takes up the bongos, and is just not terribly grateful for the hefty price tag—well, you're actually beginning to see lawsuits around breach of promise. In short, one no longer expects one's children to be a fountain of surprises or to hold you hostage to fate: rather their genetic code is read as literally and as narrowly as a fundamentalist preacher reads the Bible. The child is a product, whose warrantable features are standardized with a great and terrible faith.

The third broad area of concern we identified might be called the Tower of Babel problem. A final anecdote in this regard: Presently, I teach a class at Columbia that is offered not just to law students but to graduate students—from medicine, biology, journalism, throughout the university and as part of the core curriculum for selected college seniors. The seminar is called Human Identity, DNA and the Scientific Revolution. I co-teach it with Robert Pollack, the biologist whose words came at the very end of the film presented on the second evening of this conference. And there are two other professors with whom I co-teach the class as well—a psychiatrist and a philosopher/ethicist. And one of the things that the four of us are constantly working around is our very different senses of reference. Take the word "nature": it is a cellular reference to Bob Pollack; it is a behavioral or chemical/pharmacological reference to the psychiatrist; to our philosopher, it invokes a moral ordering based in religious codes of "natural law." And as a lawyer, I hear it as a normative social descriptor.

Similarly, the word "human" is a species boundary to Bob the biologist. To the psychiatrist it is a fluid set of behaviors and intelligences that are not necessarily limited by the ability to mate as with a species, and can include parrots, apes, dolphins, elephants and octopi; to the philosopher, "human" describes a frailty. To me, the lawyer, it is a status that invokes a set of principles and sometimes rights that are derived largely from international conventions premised on the notion of dignity.

But even within my own discipline of law, the word "human" points to deeper levels of potential confusion. If, in international law, the notion of "human rights" points to a kind of universal, borderless fraternity or our species, in American law, the human is less important than the person. And "a person" is an entity, biologically alive or imaginary, human or fictive, to whom certain kinds of legal protections are owed. Hence corporations, municipalities, and universities can be persons in that they can sue and be sued. They have standing and protection and recognition in our judicial and political system. So the confusion arises in situations like the following: when one of our law students wanted to write a paper about how dolphins should be extended personhood for purposes of lawsuits protecting their habitat and right to exist, Bob was utterly confounded; his response was "But dolphins are not human!" But as well-informed a citizen as Bob is, he missed out on the technicality that, in U.S. law, humans are not the only "persons."

This is also an interesting point of confusion when one begins to compare the configuration of our civil rights with that of international human rights. In those places outside of the United States where human rights have more resonance, "humanity" is rooted in a notion of dignity—and dignity is a kind of penumbra around the body, a social status than invokes respect and interpersonal dynamic. Hence, when Nicolas Sarkozy took issue with a company that produced a voodoo doll in his image, he sued for a violation of his dignity—and won, albeit with a very limited remedy.

In the United States, by contrast, such a suit wouldn't stand a chance on that ground, though it might be negotiated in the sphere of privacy; and that's because personhood depends more on an image of the body as discrete rather than social; more on the integrity of the body rather than its relation to others; and more on the ability of individuals to control that integrity, and less on our potential suffering as socially stigmatized or isolated. That's why racial stigma is subject to standards of strict scrutiny—acknowledging social interdependence is anomalous in our jurisprudence and not central to how we imagine the person, if not the human being.

To summarize: if, among just this very small group of like-minded academics, there is this much subtlety and confusion about our most basic parlance of what a human being is, well, it's no wonder what happens when we throw in genetic modification or other "transhuman" possibilities...

Think also about how even scientists, academics, researchers, doctors imagine the power of genetics. There's a kind of cognitive dissonance: I sometimes ask my students to draw a cartoon depicting how they imagine the DNA in their bodies; and no matter how sophisticated their scientific backgrounds, what they draw is almost relentlessly pre-modern: it's a set of "little drones" circulating just beneath the skin. It's a "womb inside each cell," or a "microscopic self curled fetally in the appendix." It's a "tiny scroll in a gold box located just behind the thorax." It's a "mini-brain with a little engine that's churning all the time." It is a "biological Torah in the Ark of the body."

It is the clarity and pervasiveness of these framing metaphors of homunculi and alchemists' ovens, these tropes in the hearts of even the most secularly scientistic souls, that I find intriguing. For these are images of religious faith and holy text and of the resurrection of the body. In the history of science, moreover, the prevalence of such images is curiously persistent. This reiterated fantasy is presents a rather large challenge for us as bioethicists and as scientists. Clearheaded-ness about the possibilities and limits, the dangers and the deliverance of this new knowledge requires holding at bay our dreams of turning lead into gold, of transcending our dank, flawed, froggy bodies, and of being hatched from a golden egg or a pure promise or a redemptive kiss or of flight into an immortal future on the back of a snowy swan.