Tired Tropes and New Twists in the Debate about Human Germline Modification

Posted by Marcy Darnovsky on May 28th, 2015

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BEINGS 2015, or “Biotech and the Ethical Imagination: A Global Summit,” billed itself as “a gathering of global thought leaders to reach consensus on the direction of biotechnology for the 21st century.” The event, held May 17–19 in Atlanta, took place against the backdrop of the simmering controversy about the use of new gene editing tools to alter the human germline, and the prospect of human germline modification was a frequent and hot topic. 

Both my observations as a “delegate” attending BEINGS 2015 and commentary about it (including this post at The Guardian by Charis Thompson, Ruha Benjamin Jessica Cussins and myself, and this coverage in BuzzFeed) unsurprisingly indicate that “consensus” is not in the cards. This is especially true because lead organizer Paul Wolpe set out to include participants representing the full spectrum of views, and succeeded in that goal.

By design, “faculty” and “delegates” addressed a broad range of biotech topics, and a months-long document-drafting process that is now underway will reflect that full range. More about the conference can be found on Twitter at #beings2015, and the organizers have promised that video will soon be posted. This post focuses mostly on comments and exchanges at BEINGS 2105 about human germline modification.

The far end of techno-enthusiastic perspectives, both on human germline modification specifically and on biotech in general, was represented by Harvard experimental psychologist and popular science writer Steven Pinker. In his opening remarks, Pinker counseled bioethicists to "stay out of the way of progress." In his closing comments, he cast “vague fears” as standing in the way of saving millions of lives. In between, he epitomized the “bad boy scientism” that too frequently characterizes the biotech field.

Pinker provided an undiluted dose of the trope that feminist scholar Charis Thompson calls the “pro-curial frame.” In that framework, “cures and treatments for disease” – promises of which are often wildly exaggerated – are pitted against “risks and ethics,” often described as fuzzy and hypothetical. Pinker, for example, told Buzzfeed that “biomedical research has the potential to save a vast number of lives and prevent staggering amounts of human suffering” and that “[g]etting in the way of progress in biomedical research means more people will be sick and die.” From the stage of BEINGS 2015, he proclaimed, “Ethics is quite simple: life is better than death, and health is better than disease. That’s it.”

In this view, any concerns about any aspect of biotechnology other than immediate harms to identifiable individuals are illegitimate. One participant summarized Pinker’s perspective with this tweet: “We need to resist bowing at the altar of amorphous existential risks without identifiable harms.” And without specifying his target, Pinker himself tweeted, “Sadly, some still use woolly dignity/sacredness arguments against curing disease & preventing death.”

Another tired trope that surfaced over and over at BEINGS 2015 was a starkly disdainful tone about “the public.” Dan Gincel, Executive Director of the Maryland Stem Cell Research Fund, talked about “a lot of public alarmism that as scientists we can discount.” Dismissals of “the public” were sometimes tempered by the view that “the public” simply needs to be educated (by scientists). As an article about BEINGS 2015 in BioWorld that gave most of its play to the biotech-cheerleading camp put it, “Much of the fear surrounding science – of any kind – can be attributed to lack of clear communication with the public.”

This view of the public, known in science and technology studies as the “deficit model,” was clearly applied to concerns about the creation of genetically modified human beings. Harvard geneticist and synthetic biologist George Church, for example, remarked that concerns about human germline modification and reproductive cloning “come up like a reflex not passing through the cerebral cortex.” Several speakers opined that the major problem regarding human germline modification is “the public’s perception” of it. Pinker went on at some length about why there’s no need to be concerned about genetic engineering of future human beings. According to BioWorld, he “scoffed at the idea of gene-editing tech ever being used to allow wealthy people to build genetically enhanced children.”

While it’s true that, as Pinker put it, “There is no gene that gives you 10 IQ points,” researchers continue to search for the combinations of genes associated with “intelligence,” and gene variants said to confer particular kinds of athletic prowess have been identified. It’s easy to imagine, as germline modification advocate and Princeton molecular geneticist Lee Silver did years ago in the pages of Time, that fertility clinics of the future will advertise the “once-in-a-lifetime” opportunity to procure genetic upgrades for “your child-to-be.”

After arguing that concerns about human germline enhancement are silly, Pinker went on to ridicule the notion that modifying the germline would represent anything new. In fact, he said, human germline modification has “no coherent meaning.” As BioWorld reported,

"I'm not sure what it means to pass on the germline to future generations," because mutations are constantly being introduced, he said. "Each of us is changing the genome, whether we like it or not, when we have children."

BioWorld did not report Pinker’s following comment that “the women who decided to sleep with me or not sleep with me were making decisions about altering the human germline.”

The litany of comments trivializing public concerns about biotech developments is unfortunately nothing new. But there's a novel twist on this trope that was in evidence at BEINGS 2015, and that's also cropped up in other recent conversations about human germline modification. It holds that people have been brainwashed to worry by anti-science depictions in literature, on television and in films. During a recent hour-long NPR program titled Re-Engineering Human Embryos, for example, host Tom Ashbrook played a clip from the 1997 film GATTACA; later that day, Carl Zimmer blogged, “I’d like an international ban on invoking GATTACA in these discussions.”

As the BioWorld account of BEINGS 2015 put this view, the public has been “conditioned by a pop culture filled with dystopian fiction – not to mention many a Hollywood blockbuster – that has instilled a common wariness for the unintended outcomes that can accompany scientific progress.” Genetics Policy Institute Executive Director Bernie Siegel came to the microphone to say that “the public is hysterically afraid of biotechnology based on what they see on TV" and that “the public thinks scientists are creating the zombie apocalypse.” Pinker warned bioethicists to “stay away from science fiction dystopias,” a category in which he included GATTACA and Mary Shelley’s Frankenstein, as well as the myths of Prometheus and Pandora.

These efforts to police the boundaries of conversation about human germline modification were in keeping with other similar moves at BEINGS 2015. In response to a comment about the experiences of physicists who helped develop the nuclear bomb and were appalled when it was dropped without warning in Japan, Pinker said, “We have absolutely nothing to learn from the Manhattan Project.” At another point, libertarian Ron Bailey declared that “the precautionary principle is an evil influence on bioethics.” In sum, these techno-enthusiasts are now arguing that as we think about the human future, we should rule out considering what we might learn from works of literature and film, as well as those aspects of myth, policy and history they don’t like.

One final cameo from BEINGS 2015 illustrates the antipathy to public oversight of biotechnology, as well as a gender dynamic that often creeps into discussions about its social implications. Dan Gincel opened his presentation on the second day of the conference with a slide of a bright red Ferrari and announced, “Now that’s innovation.” Biotech researchers, he said, are doing their best to move forward as fast as possible, and efforts to establish regulations are the brakes. That was an opening I couldn’t resist. Here’s a rough rendition of what I said in response: 

What kind of person gets to climb behind the wheel of a car like that, and who is being taken on a wild ride? In a world in which we’re trying to keep fossil fuels in the ground to avoid a civilizational climate crisis, a world of galloping inequality, should we be encouraging and celebrating a car that costs a quarter of a million dollars?

Yes, we want to keep moving forward, but carefully and following the rules of the road. And even a Ferrari has a steering wheel. A lot of us are saying that we need a way to get many more hands on the wheel – citizens’ hands. A Ferrari also has a rear-view mirror, and looking in it once in a while should help inform where we’re going. A Ferrari has brakes; we should certainly apply those as needed. In fact, sometimes we need to slam on the brakes. That’s the case with human germline modification. There’s no need to go there, and it would take us down a very dangerous road.

Previously on Biopolitical Times:

Reframing "De-extinction"

Posted by Pete Shanks on May 28th, 2015

Beth Shapiro

Beth Shapiro is a distinguished molecular biologist who has specialized in ancient DNA. She has worked on the dodo [pdf] and the late-Pleistocene steppe bison [pdf], been anointed as a "Young Innovator" by The Smithsonian, and won a MacArthur grant. Alas, she seems to have fallen into dubious company.

As she has recounted several times, she became frustrated by the press because every time she returned from a field trip hunting for mammoth DNA, someone asked her about cloning the mammoth. So she looked into it, and decided it was (a) impossible and (b) foolish. She has said that many times, at least twice in my hearing. So what on earth is she doing publishing a book entitled How to Clone a Mammoth? She told Nature:

"I probably should have called the book How One Might Go About Cloning a Mammoth (Should It Become Technically Possible, And If It Were, In Fact, a Good Idea, Which It's Probably Not). But that was a much less compelling title."

Well, she has a point. It does make the book something of a bait-and-switch, though, as some have complained and she has admitted more than once. But there is a good reason that Stewart Brand is still very much on her side, and it's not just that she has let his protégé have lab space to work on reviving the passenger pigeon.

Shapiro is conceptualizing a much more subtle, and potentially dangerous, concept than merely putting a mammoth in a zoo.

I argue that … the birth of an animal that is capable, thanks to resurrected mammoth DNA, of living where a mammoth once lived and acting, within that environment, like a mammoth would have acted — is a successful de-extinction, even if the genome of this animal is decidedly more elephant-like.

She is hoping to see what are admittedly novel creatures — for instance, "cold-tolerant Asian elephants" — not just fill ecological niches but change entire ecologies, for instance to "lower the temperature of the soil and slow the release of greenhouse gases trapped within it." In her view:

De-extinction is a markedly different approach to planning for and coping with future environmental change than any other strategy that we, as a society, have devised. It will reframe our possibilities.

That is precisely why environmentalists should be wary of these technologies. As a species, we are busily making irreversible changes to the world in which we live. We already know for certain that we have made and probably will continue to make big mistakes. At the very least, plans to deliberately re-engineer ecosystems should be subjected to broad public consultation and strict regulatory oversight. And we should be asking ourselves whether we really want to turn the entire world into Anthropocene Park.

Previously on Biopolitical Times:

The Scope of Eugenics: A Workshop

Posted by Jonathan Chernoguz on May 27th, 2015

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The Scope of Eugenics, held at the Banff Centre from May 22-25, focused on eugenics as both a historical practice and an ideological motivation. In addition to many presentations about the history of eugenics in North America, the conference sought to connect these historical examples to what participants called “Newgenics.”

Newgenics is a term used to describe current and emerging medical, political and social practices aimed at “improving” humankind, and at eliminating disability and difference. These goals are often accomplished through gentler means than those historically used in the service of negative eugenics. But Newgenic practices include coercive sterilization as well as, prenatal testing, educational standards, and institutionalization. Human germline modification, now being discussed as a real prospect, would also fall in this category. Newgenics retains the same eliminative logic of twentieth-century eugenics, though often in more subtle and differently problematic ways.  

The four-day workshop was organized by Robert Wilson and Moyra Lang of the Edmonton-based Living Archives Project on Eugenics in Western Canada.  It brought together early-career scholars interested in eugenics, and celebrated significant student contributions made to the Living Archives Project, which is supported by the Community University Research Alliance and Social Science and Humanities Research Council of Canada.

In attendance were Judy Lytton, Leilani O’Malley (Muir), and Glenn Sinclair, whose stories are featured in the upcoming documentary Surviving Eugenics, which provides a unique insiders' view of life in institutions for the "feeble-minded" during the mid-twentieth century, and raises broad questions about disability, human variation, and contemporary social policies. The film’s protagonists are people who were themselves sterilized at the Provincial Training School for Mental Defectives in Red Deer, Alberta, and their testimonies added a uniquely personal experience to the discussions of emerging Newgenic issues.

Members of The Living Archives Project spoke as well. Nicola Fairbrother, who interviewed the survivors, discussed the importance of taking personal testimony from people whose voices are typically silenced and devalued. Fairbrother’s work amplifies these voices and stories, both in the documentary and in the “Our Stories Told” section of the online Eugenics Archives. Living Archives member Justin Houle spoke about his work creating “Newgenics: The Game,” which aims to reach a younger demographic on the Archive’s webpage. 

Both The Scope of Eugenics conference and the Eugenics Archives reflect the collaborative work of scholars, sterilization survivors, students, and university and community partners in challenging eugenics in a balanced and informative way. You can explore the online Archives’ ten tools, including personal narratives, the Newgenics game, timelines, and other visual representations, to learn more about the history of eugenics and to connect that legacy to our realities today.

Previously on Biopolitical Times:

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The Blurred Lines of Genetic Data: Practicality, Pleasure and Policing

Posted by Jessica Cussins on May 7th, 2015

A new rumor is spreading that Apple may be leveraging its ubiquity to encourage iPhone owners to participate in DNA testing, perhaps to bulk up the medical data-collecting capabilities of its ResearchKit.

According to Antonio Regalado at MIT Technology Review, Apple will work with academic partners to collect and test the DNA, and may provide add-ons such as the ability to widely share genetic information directly from an iPhone with a single swipe.

This wouldn’t be the first time genetic researchers have tapped into social networks to recruit participants. University of Michigan’s Genes for Good project is using a Facebook app to encourage 20,000 volunteers to share information about their genes, health, habits, and moods to help the researchers uncover new connections between genetic variants, health, and disease.

Others are involved, too. There’s Google (with its genomic data cloud storage), 23andMe (with its $99 direct-to-consumer / direct-to-drug companies spit kit), and the United States Government (with its precision medicine initiative).

On one hand, it is hardly shocking that Apple would join the trend towards so-called open-sourcing DNA, or want to add genetic data-collection to its increasing selection of quasi-medicalized self-quantifying tools.

On the other hand, it could be smarter for Apple to sit this one out. 23andMe has been struggling to maintain relevancy since the FDA ordered the Silicon Valley-based company to stop providing genetic health information after repeated failures to prove its analytical or clinical validity. Moreover, patent infringement lawsuits are ongoing at various companies. And shocking stories about the endless possibilities for DNA hacking (not to mention the more mundane concerns of workplace discrimination and increasing insurance premiums) are becoming more commonplace.

While Apple’s ResearchKit has been growing in popularity, it has also encountered serious problems – from user bias to inaccurate reporting – all of which can lead to misleading data and ultimately to wasted research funds and increased medical costs. Adding genetic information to the mix may only compound these problems. Our genomes contain so much data that distinguishing between signal and noise is a huge problem. And then there is the point made succinctly in a recent article about “Big Data” in The New York Times Sunday Review: “The things we can measure are never exactly what we care about.”

It is also unclear whether people will rush to share this most personal kind of data. It’s one thing to take action on social networks following DNA testing – say, to join a Facebook group to discuss a shared gene variant – but enabling widespread sharing of the genetic data itself may ultimately benefit biotech companies at your or your family’s expense.

A recent news story published in The New Orleans Advocate, and later covered by the Electronic Frontier Foundation, highlights the potential for genetic data shared for a particular purpose with a private company to later be used for familial genetic surveillance in the name of law enforcement., which owns a trove of genetic data called the Sorenson Database, allowed Idaho police investigators to search through 100,000 DNA samples in their attempt to shed new light on a 20-year-old murder case.

The investigators found a DNA sample from a man that matched on 34 out of 35 alleles of DNA from the crime scene, indicating a close familial relationship.  They then used the database’s genealogical information to track down all of the man’s family members. Subsequent Google and Facebook searches led them directly to his son, who turned out to be a filmmaker known for his depiction of gruesome murder scenes.

As it turned out, he wasn’t the murderer, and was able to establish that. But he got lucky. Given the proliferating use of trace DNA in forensics, the acceptable margin of error for genetic “matches” is a problem. If the original crime scene had only provided trace DNA, the evidence stacked against this guy may very well have ended in a conviction.

If widespread sharing of our genetic data is soon enabled by Apple, it may be smart to swipe left.

Previously on Biopolitical Times:

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