Friday, April 10, 2015

Calling for “More than a Moratorium” on Human Germline Modification

Posted by Jessica Cussins on April 9th, 2015 on the blog Biopolitical Times, the blog of the Center for Genetics and Society
Untitled Document Three high-profile scientific statements published in quick succession last month called for various kinds of moratoria on research on and/or use of gene-editing techniques that would result in genetically modified humans. The statements were prompted by reports that human sperm, eggs or embryos have already been created using such techniques in China and the US, and that papers are forthcoming.

These calls from within the scientific community are important, and highlight scientists’ desires not to have their discoveries used for means they condemn. But even among this limited group of scientists, there isn’t a clear consensus about what an appropriate solution looks like. The statement in Nature argues that in vitro research should be part of a moratorium because there is unlikely to ever be a justifiable therapeutic application that warrants the associated risks, while the statement in Science calls for extensive in vitro research to explore possible clinical applications straight away.

Jennifer Doudna, lead author of the Science statement and one of the pioneers of the CRISPR/Cas9 system, gave a lecture at UC Berkeley yesterday in which she raved about how popular the technique has become in the past couple years. She expressed her desire to spread the technology even more widely, beginning with a campus workshop this summer to teach students how to use it themselves. It’s not clear, however, if Doudna’s vision for a free and open CRISPR future will pan out given the heated patent fights already stirring up.

In reality, scientists have the most to gain from the development of these technologies (whether for good or for ill), and for this reason alone are probably not the right people to be guiding international policy. Writing in The Guardian, science, technology and society policy scholars Sheila Jasanoff, J. Benjamin Hurlbut, and Krishanu Saha make a strong case that “Human genetic engineering demands more than a moratorium.” They argue that merely waiting until we have more technical knowledge misses the point:
The answer to how we should act does not lie in the technological details of CRISPR. It is our responsibility to decide, as parents and citizens, whether our current genetic preferences should be edited, for all time, into our children and our children’s children… Decisions such as whether or not to edit human genes should not be left to elite and invisible experts[.]
Patricia J. Williams, writing in The Nation, reminds us that so much more is at stake in the question of whether to genetically modify the human species than just the health of an individual resulting child.
As sociologist Nikolas Rose has observed, the very project of medicine seems to have shifted from a metric of health versus disease to one of ever-expanding perfectibility of the species itself… The post-War aversion to eugenics—the understanding that despite great variability from one human to another, no one life is worth more than another—has eroded.
Writing in The Hastings Center’s Bioethics Forum, Gregory E. Kaebnick reminds us of an important limitation of any gene editing technique at the moment:
[I]dentifying the correct genetic changes is the real issue, though, and CRISPR/Cas9 doesn’t even address this problem. In fact, no gene editing tool can solve the second problem, any more than a word processing tool can by itself solve the problem of how to write the next great American novel. To identify the “correct” genetic changes, we need to understand what the targeted gene does, but also how it interacts with other genes, and also how the genome interacts with environments. We’re not there.
And at Ivy Magazine, Jamie Metzl summarizes the dangers of human germline modification, including:
[P]lain hubris….When we tinker with systems we don’t fully understand, it is very likely we’ll make mistakes….A genetics arms race, especially if different societies have different ideas about the desirability of genetic selection and engineering….Start[ing] to see our children as consumer products.
Metzl invites readers to visit his website and read his novel Genesis Code, and notes that “This may be the most important issue of our lifetime, and yet it hasn’t entered into public consciousness."

These articles are welcome, and necessary, contributions to the public debate at a time when some “practical bioethicists” (all of whom have argued in favor of human germline enhancement) can see only “emotive panic” in the call for broad engagement with this consequential decision for the human future.

It is also nice to see stem cell biologist Paul Knoepfler take these transhumanist-leaning Oxford bioethicists to task for their “one-sided verbiage”:
So experimentally de novo creating designer babies with gene edits that the resulting genetically modified people could then pass along to future generations forever with unknown consequences is really not so different than say getting your vision corrected, stepping outside to smoke a cigarette, changing ones friends or allowing new generations to use the Internet?
I don’t think so.
Other scientists continue to be vocal critics, too. Eric Lander, founding director of the Broad Institute of MIT and Harvard, told C. Simone Fishburn of BioCentury that there is no therapeutic application he can think of that would justify gene editing in human germline cells.
Huntington's patients are heterozygous; 50% of the embryos are just fine, so you can use IVF. There's no case for using germline gene editing in Huntington's because we have a simple technology for people with the disease… We need to truly ban this from a moral standpoint.
Amazingly, despite such widespread disapproval for barreling ahead with this level of manipulation of future humans, it seems that commercial ventures have already been established to utilize precision gene editing techniques. OvaXon is a joint venture between OvaScience and Intrexon that promises to develop “new applications to prevent the transmission of inherited diseases by gene-correcting egg precursor cells for applications in human and animal health.”

A sentence from the article in The Guardian is worth repeating: “Knowing science does not teach us how to live well with its power.” The increasing collapse of barriers between scientific endeavor, commercial enterprise, and careerist aspiration mean that we can no longer casually defer to scientists as voices of objectivity. Moving forward, we desperately need to broaden the conversation about the desirable uses of this technology to include students and teachers, public health workers, reproductive and disability and racial justice advocates, concerned members of the public, and more. There is surely as much to learn and consider about the social and policy implications of germline modification proposals as about their technical details.
Previously on Biopolitical Times:

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