Editor’s Focus: Double helix, double bind

Of all the areas where 'just because you can doesn't mean you should' ought to be a leading tenet, genomics is at the top of the list. The promise of gene editing must be partnered with caution regarding the ways it could be mishandled; we need to decide now which lines shouldn't be crossed, rather than backtracking after someone steps over them.

January6th,2020
Jeffrey Bouley
Is there anything more satisfying than finding the perfect-fitting jeans? Or is it genes? Or both? Aside from aimless wordplay, there is some metaphor in there too. Over roughly a decade or so, I have seen mentions of gene-related therapeutics, diagnostics and other research take an ever-increasing share of the word counts in this magazine and on the website.
 
Among the small molecules, large molecules, vaccines and such we have gene sequencing, gene editing and gene therapies standing proud and strong as well, just like jeans are found ubiquitously among the trousers, shorts, skirts and leggings in most any crowd.
 
In this issue alone, we have a story in Market News section (grab the PDF of the issue online on our website and look on on page 2) that mentions the strong and growing role of gene therapies in the hemophilia market, and at the other end of the magazine, on page 31, word of a new technology that finally might allow control of gene therapy doses—and in between them, an entire special report starting on page 14 focused on gene therapy (you can also view the special report online by clicking here). And you likely won’t go many pages in the magazine before seeing “gene” or “genetic” or “DNA” or “genomics” or any myriad relatives crop up in the text.
 
And that is a good thing, as advancements in genetic knowledge and our ability to scan, understand and change genomes will play an increasing role in human health as well as many other areas of life.
 
But—there’s always that “but,” isn’t there? But there is a risk as well when we start to get really good at something and don’t do enough of the work at the front end to curb the kind of enthusiasm that leads to potential abuses.
 
Nuclear physics is a wonderful field, but it also quickly led to weaponizing the atom in the form of nuclear weapons. Genetically modified organisms in agriculture have enabled hardier crops in many cases, but now farmers who once banked seeds away as a resource have to perpetually pay to use commodity seeds created by mega-corporations. And in the life sciences, genome sequencing leads to concerns about privacy and genetic modification leads to fears of eugenics—which are not irrational fears, either.
 
We’ve seen at least one researcher already recently use CRISPR to modify the genomes of human babies, and that’s the kind of thing that leads to messaging like this in my inbox from the Center for Genetics and Society:
 
“As 2020 approaches, we’re looking back on the decade that saw heritable genome editing change from science fiction to reality. Where will we be next year at this time? A decade from now? If we don’t act—and act soon—we could be looking at a future in which ‘upgraded’ genes are available only to the children of wealthy parents, and powerful misuses of technology distort our beliefs about who is normal, healthy and ‘fit’ to reproduce ... We’re not alone in this fight: Many scientists, bioethicists and social justice advocates agree that heritable genome editing is the most serious threat to genetic justice today.”
 
I’m a fairly old-school journalist, so I admit that while I love my fellow humans and try to give the benefit of the doubt as much as possible, there is a strong cynical streak in me. I know how easy it is for us to do something before considering whether we should, or do it before someone else does because we assume it’s inevitable—and who wants to be one-upped later by someone less restrained?
 
Hopefully, some of us will be willing to risk being one-upped, though. We’re at a critical stage when we need to set some very clear boundaries along with very real consequences for crossing them. Genomics is one of our greatest achievements in recent history and one of our greatest hopes for better diagnostics and more cures for diseases. Let’s do it right.
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