Scans of media coverage carried out by CGS and others after the National Academies of Medicine and Sciences co-sponsored International Summit on Human Gene Editing in early December revealed that, for editors at least, it was a confusing event. Some stories ran under headlines signaling that gene editing research had been given a green light [Science]; others said scientists were seeking a moratorium [The New York Times].
Since then, several disquieting themes have emerged online in mainstream media and science blogs. These include the phenomenal medical gains to be had from gene editing for somatic therapeutic interventions, with the attendant piquing of interest among venture capitalists in search of the next big profit-taking opportunity in biomedicine.
There is also ongoing discussion of the desirability of “fixing” the human genome through reproductive genetic interventions. Disturbingly, some commentators are touting the “inevitability” of human germline. And a few powerful voices in science and bioethics seem to be at pains to prove that CRISPR-Cas9 modifications that aim to “improve” resulting offspring—eugenics by any other name—would be categorically different from any previous efforts of that sort because they would be driven by public demand rather than state mandate.
Take, for example, the December 22 Quartz piece whose headline trumpets that 2015 was “the year it became OK to genetically engineer babies.” The article itself, by Akshat Rathi, makes less forceful claims about the “okayness” of designer babies, but does argue
[W]hen historians of science look back decades from now, they may well mark 2015 as the year genetically engineering humans became acceptable. That’s because, while the world was paying attention to the gene-editing summit, a more momentous decision had been made just a month earlier in the UK.
That decision was the British Parliament’s approval of regulations allowing so-called “three-person IVF” which produces heritable alterations in embryos, though via a technique that’s very different from gene editing. Rathi goes on to predict:
Based on past progress, it is likely that genetic enhancements to humans will become a reality step by step. Just like mitochondrial replacement therapy, they will first appear for a very narrow purpose, such as curing single-gene disorders, and then, likely over many decades, we might reach the stage of creating those fabled designer babies.
Rathi is not alone in proclaiming the coming of the new age of genetic tinkering. For example, Michael Specter in The New Yorker, writes of CRISPR-Cas9, “Inevitably, the technology will also permit scientists to correct genetic flaws in human embryos.”
But is reproductive human germline editing inevitable? Rathi offers an ostensibly well-founded prediction on past evidence, but errs in globalizing from the case of Britain. Specter forecasts from a more gee-whiz angle.
Such decontextualized and ahistorical rhetoric does no one a service. At this date in the world’s history, it is fatuous to contend that all technologies must be used because they are developed. Technology indeed has an internal momentum, as individuals and industries seek to refine existing techniques and products. But even path dependence—the tendency for newer innovations to build upon older ones—is not a given. The history of invention is littered with cases in which old forms are abandoned completely (think CDs and VHS) or technologies are simply not deployed.
And Britain cannot be taken as a norm of any sort with regard to genetic policy. Since the 18th century, the British have been fascinated by animal and agricultural breeding. In the 19th century, Galtonian eugenics sprang from a particular cultural ground, combining longstanding classist, racist, imperialist, and liberal capitalist notions with biology to yield scientistic social policies—policies that were different not in kind but in degree from previous approaches to controlling the lower classes.
Despite the claim by many that after WWII British recoiled from eugenics, we know that is not true. IVF developers Patrick Steptoe and Robert Edwards both voiced eugenic aims for their IVF research, and in the past ten years or so, a vocal and influential group of neo-eugenicist philosophers and biologists there have pushed a eugenics agenda and acted as boosters for germline interventions.
One such advocate, Julian Savulescu of Oxford University, has even argued that to “save” humanity, we should pursue the elimination of “genes” for “aggression” and other “negative” traits. Savulescu goes one step further by maintaining that would-be parents are morally obligated to make these kinds of interventions on embryos.
But when we look beyond Britain, the landscape appears quite different. Modification of human embryos by whatever technique has been seen as problematic enough to have been prohibited in over 40 countries and such interventions are anathema to many people, including scientists, in countries that do not yet have specific policies in place. Rather than focus on inevitability, better to ask how, when, and by whom germline editing might be used. Given the breadth of opposition, where would the drive come from for the wholesale policy changes that would need to happen to make germline editing a widespread reality?
So-called “patient demand” could be a factor. As historian of science Daniel Kevles pointed out at the gene editing summit, eugenics was never limited to state interventions, but embraced widely by individuals. In Politico recently, Kevles wrote,
What could happen now is likely to be far more bottom-up than the top-down, state-directed racial programs of the past—individuals and families choosing to edit their genes, whether to prevent illness or improve capacity or looks, and finding themselves encouraged to do so by what was absent in the era of eugenics: the biotechnology industry.
During and after the summit, reporters advanced the patient demand argument, seizing especially on the tearful plea during a comment session by Sarah Gray, from the American Association of Tissue Banks, who had lost a baby to anencephaly (a condition whose unclear genetic basis would make it ill-suited for gene editing), “If you have the skills and the knowledge to fix these diseases, then frickin’ do it.”
But is all patient demand really what it seems? As Boston University sociologist Ruha Benjamin noted—referencing scientists’ campaign in 2004 for $3 billion in public funding for stem cell research in California—it is possible to leverage a “pro-cures” bias and to mobilize patients and their families to fight on behalf of scientists’ agenda. At the gene editing summit, Benjamin suggested that patients could again be co-opted by scientists eager to move forward with both therapeutic and germline applications of CRISPR-Cas9.
The campaign in Britain over three-party embryos also prominently featured narratives of women afflicted with mitochondrial disease and their traumas and travails. Such tales pull at the heartstrings and deflect attention from broader ethical considerations and, in some cases, facts. As David King, who runs the watchdog group Human Genetics Watch, remarked when the UK’s fertility agency, the Human Fertilisation and Embryology Authority (HFEA), approved mtDNA work,
The decision is very disappointing, but comes as no surprise, since the HFEA can never say no to scientists. These experiments are scientifically useless and morally very problematic. The research lobby has distorted the scientific facts in order to defuse criticism.
Although it has been described as exceedingly thorough—with several reviews by an expert panel, solicitation of views on ethical issues, surveys and calls for comment from the public, and debates in the House of Parliament—the HFEA process has also been deemed problematic by civil society groups in Britain and elsewhere. And as CGS consultant Pete Shanks and CGS staffer Jessica Cussins found, the HFEA’s claim of “broad public support” for approving the techniques is misleading at best.
The gene editing summit, while billed as a “global discussion,” was also found wanting. CGS’s Marcy Darnovsky and others in attendance (see, for example, presentations by Catherine Bliss and Ruha Benjamin) enumerated the many groups left out. If the NAS is genuinely committed to “ongoing discussion,” as it has said it is, it should develop a robust framework for how and when those discussions will occur and implement measures for true inclusivity. As David Corn of the Innovative Genomics Initiative at University of California has written, “We need to keep talking about gene editing. And by ‘we’, that means everyone, even across national boundaries. And everyone in all walks of life needs to be involved in the conversation.”
Gina Maranto is a fellow at the Center for Genetics and Society. She is Professor and Director of Ecosystem Science and Policy and Coordinator of the Environmental Science and Policy program at the University of Miami's Leonard and Jayne Abess Center. Her articles, opinion pieces, and reviews have appeared in Discover, The Atlantic Monthly, Scientific American, The New York Times, and other publications. She is the author of Quest for Perfection: The Drive to Breed Better Human Beings.
Previously on Biopolitical Times:
Composite image via Flickr/John Ward, Flickr/Rob Pearce, Flickr/Gennie Stafford
Posted in Assisted Reproduction, Biopolitics, Parties & Pundits, Inheritable Genetic Modification, Media Coverage, Medical Gene Transfer, Synthetic Biology, The United Kingdom, US Federal
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