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Of Clocks and Mammoths: The Pitch for De-Extinction

Posted by George Estreich, Biopolitical Times guest contributor on February 9th, 2015


Untitled Document

Introduction

De-extinction raises a host of questions: ethical, practical, philosophical. But for advocates, there’s a rhetorical question as well: How do you persuade a lay audience to support the project? That persuasion involves special challenges: one has to explain and normalize a complex technology, answer ethical objections, and make a radically new approach to nature seem emotionally “right.”

De-extinction has been much discussed in print, but the most complete case for the project is made at the website of Revive and Restore, a nonprofit dedicated to “genomic conservation”; their “overall goal,” in their words, is “enhancing biological diversity and ecological health worldwide.” Revive and Restore—the project of environmentalist, entrepreneur and Whole Earth Catalog founder Stewart Brand, and his wife, Ryan Phelan—touts, sponsors, and helps to coordinate several hoped-for restorations, including the heath hen, the passenger pigeon, and the woolly mammoth. In TED talks and other forums, Brand has been a passionate advocate of de-extinction.

Revive and Restore’s webpages are artful and complex: words, images, and video combine and reinforce each other, and appeals to reason and emotion are interwoven. The total effect of these strategies is to present de-extinction as an ideal route to an ideal outcome; in doing so, however, the persuasion tends to erase or minimize complexities, both technical and conceptual. To see how this works, let’s take a closer look, beginning with the smallest unit: the word chosen to describe the project.

Prefixes, nouns, and frames

The word “de-extinction”—neutral, scientific-sounding—frames the discussion in a powerful way. That power resides largely in the prefix.

1. The prefix assumes a central and debatable premise: that extinction can, in fact, be reversed. If this premise is accepted, then conceptual questions (would an engineered approximation count as a revival? is it right to revive an Ice Age creature on a rapidly warming planet?) become secondary to technical ones (what is the best way to bring species back?). To Brand’s credit, he has engaged with these questions publicly; but they are clearly secondary to the project of revival, which has already begun.

2.  The prefix also frames the technology as positive, opposing it to “extinction,” just as the word revival links it to life. At the same time, the coinage gives the reader a foothold in the familiar, linking synthetic biology to the known. This tactic is used throughout the webpages, which is filled with words like revive, restore, rescue, conservation, comeback. Often these words are paired with a technical word (“genomic conservation,” “genetic rescue”). These phrases position science and technology as saviors, not threats.

As a result, a complex world of ideas and choices is divided into simple alternatives: extinction or de-extinction, loss or rescue.  This is the beginning of persuading people to adopt one alternative, and not the other.

What’s next? Filling in the frame with a picture.

Images: filling in the frame

On a well-designed webpage, words and images work together. That’s true of the Revive and Restore home page, where reproduced paintings show us images of the species to be restored, including a composed still life of lost species, with the passenger pigeon front and center; an image of a single pigeon, soaring in the sky; and a picture of a woolly mammoth in fisheye perspective, its majestic tusks dominating the foreground, the curvature of the earth barely visible behind it. The mammoth is, in Brand’s terms, “iconic.”  These images are informative, in that they show us species that are lost; but their true function is persuasive: they help the viewer imagine an ideal outcome of the de-extinction experiment.

In context, however, a digital reproduction of a painting is more than a little ironic. Though the lush realism of the image evokes another century, a time when many extinct species were alive and abundant, the image functions differently in practice: digitally reproduced, distributed on the Internet, viewed on screens, the images are computer-dependent reproductions used to advocate for computer-dependent reproductions. (In the large composed still life, we can “mouse over” lost species to learn more.) 

The emphasis on the visual is a function of the medium. But this medium privileges the beauty of individual members of species over other things harder to represent: less beautiful species that matter more in an ecosystem (like, say, bees); groups of animals (it’s ironic that we see a single pigeon, and not flocks); and ecosystems themselves. But the emphasis on the visual is also driven by the economics of restoration. To paraphrase a recent interview with Brand, mammoths are easier to fund than mice: “As architects say, form follows funding. The animals that will draw avid supporters who have avid amounts of money will probably be the first ones that get dealt with.”

An idealized process

Persuading the public to approve of new technologies entails explaining those technologies. That explanation, however, has a persuasive bent. We can see this tendency in a clever graphic on the Revive & Restore site: the “extinction continuum.”

This graphic gives form to the project’s central premise. Like the word de-extinction, the graphic implies that species can be restored in their original state, while linking that premise to the power of biotechnology (“How Biotechnology Can Help” is the caption). It’s also deftly constructed, and more complex than it first appears.

In the graphic, both living and lost creatures are recognizable silhouettes, as if to emphasize the uncertain status of threatened or theoretically revivable species: present yet absent, gone but not lost. Only one creature—the dinosaur, with “no DNA” available—appears as a skeleton. The other animals, whether extinct or still living, are rendered in shades of gray. That, and the ability to see all the creatures in a single image, makes it almost as if the extinct creatures are still present—thus making “revival” imaginable, as if the pigeon simply needed to follow the green arrow back to “recovering.”

And yet the arrows, though graphically parallel, are conceptually askew. One (the red) is factual. The other (green) is hypothetical. Therefore, the diagram blurs the distinction between fact and projection. It is fact that the passenger pigeon is extinct; whether it is “revivable” is hypothetical, and “reintroduction” and “recovering” extend the hypothesis. Fact and optimistic projection coexist in the same image.

That optimism reaches its zenith in one of Stewart Brand’s selling points for reviving the mammoth: ameliorating climate change. In a short essay reproduced on the Revive and Restore site, Brand writes, “[The mammoth’s] return to the north would bring back carbon-fixing grass and reduce greenhouse-gas-releasing tundra.” In this paradigm, the mammoth—an engineered creature—will itself become an agent of geoengineering. Created to live on the earth, it will also alter the earth in a beneficial way.

Apart from the optimism cascade required to believe that synthetic mammoths will help lower the Earth’s temperature, the scenario displays a fundamental tension in the de-extinction project: it is sold with the rhetoric of restoration and preservation, but driven by an ethic of engineering and control.

Blockbuster resurrections

To sum up: de-extinction frames the issues with a deft use of naming, establishes a vivid picture in words and images of a desired outcome, establishes biotechnology as the sole route to that outcome, and portrays the technology itself in a positive light.

Similar patterns are visible in the persuasive tactics used for other technologies, including noninvasive prenatal testing and mitochondrial transfer. But the pitch for de-extinction has a distinguishing feature: what I call a “blockbuster aesthetic,” a belief in visual spectacle, technical impressiveness, the project’s sheer size—and perhaps even its expense—as proofs of value.

The “revival” of the woolly mammoth, and of the passenger pigeon, closely resembles a Hollywood movie: the revival and restoration of the Jurassic Park franchise, for example, or (as historian of science and medicine Anita Guerrini suggested to me) Avatar.

As with those movies, the relaunch of the species is closely associated with a larger-than-life, charismatic auteur. And as with those movies, the return of lost species is meant to awe and overwhelm. In Stewart Brand’s narrative, these effects have a moral purpose:  

Such animals can also serve as icons, flagship species inspiring the protection of a whole region. 

and:

Conservationists are learning the benefits of building hope and building on hope. Species brought back from extinction will be beacons of hope.

The return of the marvelous marsupial wolf called the thylacine (or Tasmanian tiger), extinct since 1936, would ensure better protection for its old habitat.

The returned species, in other words, will be living persuasive tools. Images in the present will inspire action to “bring back” species; those species will then themselves inspire further action. What is hoped for, then, is a feedback loop of persuasion.

“The Long Now”

What troubles me most about the paradigm Brand promotes is the naïve idea of interpretation at its heart: the belief that the creature, once authored, will be understood, even decades from now, precisely as its creator intends. That naïveté is present in another, seemingly unrelated project of Brand’s Long Now Foundation: The 10,000 Year Clock.

This clock, a massive device composed of “marine grade 316 stainless steel, titanium and dry running ceramic ball bearings,” and currently being built inside a West Texas mountain, is meant to “creatively foster long-term thinking”: pilgrims, hiking miles to the clock, will witness it and presumably think about time in a different way. (They will also need to help wind it occasionally.) From the Long Now’s home page:

Such a clock, if sufficiently impressive and well-engineered, would embody deep time for people . . . . Ideally, it would do for thinking about time what the photographs of Earth from space have done for thinking about the environment. Such icons reframe the way people think.

Like a living mammoth, the clock’s sheer scale is meant to elicit a specific idea. The idea of “deep time,” expressed by the phrase “The Long Now,” is an interesting one—and, like the reversal of a tragic extinction, difficult to oppose in principle.

And yet I see a second meaning in the phrase “The Long Now.” The 10,000 Year Clock and the revival of lost species are meant to demonstrate taking the long view beyond our present moment. But it seems to me that they do precisely the opposite: they extend specific, local, cultural values associated with our time and place—and, even more specifically, with Silicon Valley—into the foreseeable future. In the uncritical belief in technological solutions, in the belief in size and spectacle, in the exalting of computing power that bridges both online persuasion and the engineering of new genomes, “The Long Now” may mean something other than its authors intend.

George Estreich received his M.F.A. in poetry from Cornell University. His first book, a collection of poems entitled Textbook Illustrations of the Human Body, won the Gorsline Prize from Cloudbank Books. His memoir about raising a daughter with Down syndrome, The Shape of the Eye, was published in SMU Press’ Medical Humanities Series. Praised by Abraham Verghese as “a poignant, beautifully written, and intensely moving memoir,” The Shape of the Eye was awarded the 2012 Oregon Book Award in Creative Nonfiction. Estreich lives in Oregon with his family.

Previously on Biopolitical Times:





FDA Regulation and Early Prenatal Testing

Posted by George Estreich, Biopolitical Times guest contributor on February 5th, 2015


Editors' note: The US Food and Drug Administration is currently considering regulation of laboratory developed tests (LDTs), which include noninvasive prenatal tests. The comment here was submitted to the FDA by George Estreich, as part of a comment period that closed on February 2. The FDA's materials on LDTs can be found here.

To the Food and Drug Administration:

I’m writing to urge the FDA to regulate the new, noninvasive prenatal tests, and I wish to focus particularly on health claims being made in the advertising for the tests. If prenatal testing is to be of greatest benefit both to individual women and to society at large, the information that accompanies that testing should be accurate, complete, useful, and most of all nondirective. The ads for NIPT do not meet these criteria. As a result, the advertising has a number of potential adverse consequences for consumers.

Beth Daley’s recent investigative report in the Boston Globe offers a disturbing look at the consequences of misinformation: as Daley notes, when both health professionals and patients believe that the test is “99% accurate,” as it is often advertised to be, both false positives and false negatives have serious consequences for prospective parents’ state of mind, and for the course of an intended pregnancy. Believing the test to be accurate, women have aborted healthy fetuses in the case of a false positive, or have carried fetuses with severe conditions to term.

These beliefs are mistaken, but they are completely understandable, given the expertly executed ads for the technology. Though the figure “99%” is ubiquitous in the ads, whether referring to sensitivity, specificity, or “accuracy,” the number of true interest to a consumer—the positive predictive value—is either in fine print, or difficult to find. As genetic counselor Katie Stoll has pointed out, the PPV—the chance that a positive is a true positive—ranges from around 50% accurate in the case of the most common conditions, to the single digits in the case of some of the microdeletion screenings now being offered. In some cases, the claim of accuracy is supported by the factually inaccurate claims that “fetal DNA” (or even “your baby’s DNA”) is tested directly. (It is placental DNA that is tested; the occasional mismatch between fetal and placental DNA likely accounts for false results.)

Misleading statistical claims are accompanied by powerful emotional appeals. The ads for NIPT are rife with images that provide emotional content, but no clinical information: beautiful pregnant women and chromosomally normal children. These images, along with risk-laden descriptions of the conditions to be avoided, establish an emotional, value-charged implicit argument for the test.

Indeed, even the name “noninvasive” is part of a coordinated marketing campaign. The companies contrast the test with amniocentesis and CVS, whose risks are repeatedly highlighted. And yet this approach may mislead. Since NIPS is not a diagnostic test, but a screening test, a positive result will require confirmation by invasive techniques. Therefore, it is troubling to see NIPS framed as an alternative. There’s a further danger too: in emphasizing the miscarriage risks of amnio and CVS, while presenting NIPS as accurate, the ads may discourage women from using the truly diagnostic test available to them.

In the ideal world, women would receive accurate, complete, and nondirective information to accompany a prenatal test. They would also have access to a genetic counselor or other expert health professional to help them interpret results. But the ads for NIPT are the opposite of this ideal: they are covert, using emotional appeals and misleading statistics; and they are, by definition, directive, in that their aim is to get consumers to opt for an expensive, proprietary test.

Because of the size of the market, the potential health consequences of this advertising are extensive. False results may lead to avoidable anxiety, and even to irreversible outcomes. In addition, the ads may undercut the relationship between healthcare provider and patient, requiring the provider to explain where the ads exaggerate. Regulating advertising for NIPS can therefore result in better outcomes for patients.

George Estreich received his M.F.A. in poetry from Cornell University. His first book, a collection of poems entitled Textbook Illustrations of the Human Body, won the Gorsline Prize from Cloudbank Books. His memoir about raising a daughter with Down syndrome, The Shape of the Eye, was published in SMU Press’ Medical Humanities Series. Praised by Abraham Verghese as “a poignant, beautifully written, and intensely moving memoir,” The Shape of the Eye was awarded the 2012 Oregon Book Award in Creative Nonfiction. Estreich lives in Oregon with his family.





Precision Medicine in Context

Posted by Pete Shanks on February 5th, 2015


President Obama delivering his State of the Union speech in 2015

In the State of the Union speech delivered on January 20, President Obama made the first announcement of what seems to be a major policy initiative:

I want the country that eliminated polio and mapped the human genome to lead a new era of medicine one that delivers the right treatment at the right time. In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable. So tonight, I'm launching a new Precision Medicine Initiative to bring us closer to curing diseases like cancer and diabetes, and to give all of us access to the personalized information we need to keep ourselves and our families healthier. We can do this.

That's all he said about it in that speech, though one cystic fibrosis patient, William Elder, was invited to sit with the First Lady. (By the way, the cystic fibrosis reversal is not exactly news, and not as widely applicable as once hoped. Only 4% of those affected by cystic fibrosis benefit, as Elder does, from Kalydeco, a drug approved by the FDA in 2012, which incidentally costs some $300,000 a year.)

Some observers felt "a bit of déjà vu" Jeremy Gruber found a rather similar statement in the 1998 State of the Union delivered by President Clinton. Indeed, then-Senator Obama proposed legislation to promote "genomics and personalized medicine" in both 2006 and, with Republican Senator Burr, 2007.

We soon learned that the historical connections go much further back. More than four decades, in fact, to Richard Nixon's 1971 State of the Union.

That connection was made clear at the end of January, when Obama, just before formally presenting his budget to Congress, officially launched the Precision Medicine Initiative at the White House with remarks in front of a distinguished invited audience. Among those present were patients (including Elder and Kareem Abdul-Jabbar), politicians, public officials and other researchers. Also in attendance were both biotech entrepreneur Craig Venter and National Institutes of Health head Francis Collins, who famously competed in the late 1990s race to "map" the first human genome.

The related fact sheet included the $215 million price tag that reached many headlines, though the President stuck mostly to generalities. Collins and Harold Varmus simultaneously released an article in the New England Journal of Medicine, which was much more specific:

The proposed initiative has two main components: a near-term focus on cancers and a longer-term aim to generate knowledge applicable to the whole range of health and disease. … Oncology is the clear choice for enhancing the near-term impact of precision medicine. … Although cancers are largely a consequence of accumulating genomic damage during life, inherited genetic variations contribute to cancer risk, sometimes profoundly.

An important part of the proposed approach is to "engage a million or more Americans to volunteer to contribute their health data." The idea is to encourage "strong partnerships with existing research cohorts, patient groups, and the private sector" while simultaneously "developing new approaches to patient participation and empowerment." The President stressed in his remarks that

we're going to make sure that protecting patient privacy is built into our efforts from day one.

He also lauded "patients' rights advocates" who will "help us design this initiative from the ground up, making sure that we harness new technologies and opportunities in a responsible way." In case any skeptics are not reassured by this, the fact sheet also refers to privacy experts and medical ethicists (apparently they get $5 million).

Summaries can be found at Reuters, GenomeWeb and The New York Times, among others. NIH is holding a conference on the initiative on February 11-12.

Policy proposals offered by a Democratic President to a Republican Congress are, to say the least, unlikely to be translated unchanged into legislation. But this one may sail through, suggests Politico, partly because it "doesn't cost a lot" (ouch, but the money is basically a rounding error in a $4 trillion budget). Also, some Republicans are already generally on board. It probably helps that a bipartisan group in the House of Representatives has announced a "21st Century Cures" discussion document [pdf], which bids to reform the way the FDA translates research into clinical application.

There are critics and caveats, as well as giddy boosters. David Altshuler (formerly of the Broad Institute, now of Vertex Pharmaceuticals) warned that any new medicines are 10–15 years away. Mayo Institute researcher Michael Joyner called it "'Moonshot' Medicine" in The New York Times and predicted that "precision medicine is unlikely to make most of us healthier." Hank Greely of Stanford told Vox that "It's been the hot thing coming for almost 20 years."

But the publicity-savvy process has started a conversation in The New York Times, Washington Post, NBC, National Journal, and elsewhere. So we might as well throw in a few questions that have not been adequately addressed:

  • Is this initiative going to over-emphasize a gene-focused view of disease? Since the vast majority of common complex diseases are influenced by many genes, how much practical help will genetic sequences even a million of them turn out to be?
  • Might it lead, in practice, to racialized medicine? Like "personalized medicine" (the now discarded term for what's being proposed), precision medicine will likely be tailored not to individuals, but to groups. Will people be categorized on the basis of actual genetic information, or will researchers and physicians continue to use "race" as a biological proxy?
  • Will it detract from other public health approaches? It is discouraging that the hoopla over this announcement seems to have overshadowed a much larger, and likely more important, commitment to funding research on antibiotic resistance: that's penciled in for $1.2 billion but didn't receive the celebrity treatment.
  • Will the (welcome) nods to privacy concerns be adequately backed up in practice? Will those who turn over their DNA sequences be adequately informed of the breach-of-privacy possibilities and consequences?
  • And why this rebranding? "Personalized medicine" has been the most common term for the kind of individualized care being discussed here. "Precision" sounds, perhaps, more high-tech but it turns the focus away from people and toward the technology. That might be the wrong direction.

Finally, we must not forget the history. President Nixon, in the 1971 State of the Union declared:

I will also ask for an appropriation of an extra $100 million [worth over $500 million today] to launch an intensive campaign to find a cure for cancer, and I will ask later for whatever additional funds can effectively be used. The time has come in America when the same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease. Let us make a total national commitment to achieve this goal.

We have been "at war" with cancer for nearly half a century. There have been advances in both treatment and prevention, certainly, but we are nowhere near "conquering" the disease. Genomic analysis of tumors, for instance, may help in targeting interventions, and research funds are always welcome, but hype can lead to deadly disappointment. Let's not get too excited yet.

Previously on Biopolitical Times:





Who Needs a Synthetic Biological "Safety Lock"?

Posted by Pete Shanks on February 4th, 2015


E. coli

Two papers published simultaneously in Nature on January 21 describe a novel strategy for biocontainment (1, 2). Both teams, using different methods, engineered a strain of E. Coli to be dependent on a synthetic amino acid that does not exist in the wild; if the bug leaves the lab, it quickly dies.

George Church's Harvard lab produced one of the papers and previously nurtured the career of Yale's Farren Isaacs, lead author of the other; they had both worked on a related 2013 paper about "genomically recoded organisms" as well as the seminal 2011 paper on genome-wide codon replacement. The Yale team also published a paper on genetic safeguards in Nucleic Acids Research. The ever-ebullient Church told reporters:

"We do consider this a new class of organism. It's not just a new species. In a way it's a new kingdom."

An accompanying Nature editorial described this as keeping the genetically modified organism "on a leash" and added: "Pull too tightly on the leash and it turns into a noose." For a less metaphorical explanation, see GEN, Ars Technica, Ricki Lewis (scroll down past some whining about GMO activists), Nature News, and the Harvard press release. Tabitha M. Powledge has a summary of reactions at her PLoS blog.

There is at least a long way to go before we see useful products relying on this containment strategy. It is certainly possible that it may not scale effectively, especially (as Helen Wallace told The New York Times) when "combined with the genetic changes needed for industrial use." But even if the technology does reach the market, many serious questions will remain.

For one, who benefits? Says researcher Isaacs:

[A]n intellectual property incentive exists for companies to develop the biotechnology further, because they could secure the use of their proprietary bacteria by mixing a growth cocktail only they would know.

According to Kari Lydersen at Discover:

Church noted that the viral resistance could be an incentive to "sweeten the offer" and encourage companies to use "safe" GMOs. The technique could also provide intellectual property protection for industrial, pharmaceutical or food companies, since they could make their own GMOs dependent on specific synthetic amino acids, and other companies would have trouble replicating those modified organisms without the "key." Such built-in IP protection could actually encourage collaboration between different companies, Isaacs said.

Church also told Adam Rutherford of The Guardian that one of his goals is "mollifying campaigners," adding that "if they don't like this, we'll ask what they would prefer, and keep going. We want to get this right."

One lesson of GM agriculture is that the technology has been used primarily to benefit the corporations that sell the products to farmers who become tied, as with a leash, to modified seeds. It is not hard to see this "biocontainment" strategy similarly being used for the benefit of big companies rather than society as a whole. It may be a nifty trick, but is it really what we need?

Previously on Biopolitical Times:






 


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