Gene editing is at once promising and perilous. Or, as John Oliver said in a recent episode of his news show, it is ”either going to kill all disease or kill every last one of us.”
The Nuffield Council on Bioethics is not as amusing as John Oliver, and unlike the summer film “Rampage,” its new gene editing report features neither The Rock nor a genetically modified, 30-foot wolf.
But if you want to understand what we may actually be getting ourselves into, England’s de facto national bioethics commission has produced a useful roadmap for educating the public and addressing concerns. It may the summer read you’ve been looking for.
And if there’s a gene splicer for envy, I’m ready to be CRISPR’d.
Because the U.S. has nothing at the national level like the Nuffield Council. And while imagined scenarios of human genome editing run amok cannot be dismissed, more concerning to me is the gap in public understanding of what it all means. There is no CRISPR for health disparities, and in children-in-cages America, there is no bioethics leadership from the top.
The need here for moral leadership in high places is no less urgent than it is in England. STAT recently reported on new findings that “CRISPR-Cas9 can cause significantly greater genetic havoc than experts thought.” Cancer might be one of them.
With gene editing, there is ample risk and benefit to severely test moral discernment. What’s needed to somehow balance these knowns, unknowns, and unknowables is public engagement that gives priority to public trust, and transparent leadership in high places. With gene editing, to the degree possible, we need to understand with a certain confidence what we’re getting into.
For me, health disparities and equity are the key concerns expressed in the Nuffield Council report. The authors worry that “the potential benefits and harms of genome editing might not be distributed equitably” and that “negative effects could cause discrimination, injustice or disadvantage to certain individuals or groups.”
Forget “could” — there will be discrimination, injustice and disadvantage. It’s what we do. The privilege of gene editing’s beneficiaries will multiply like stem cells in a centrifuge.
So if I could encourage one take-away from the Nuffield report for geneticists and other medical scientists, it is that they add this question to their research template: How will my work serve justice and vulnerable populations? How can I consider social ills alongside new medical miracles for the already privileged?
A good starting point might be the National Academy of Medicine’s new report on health disparities for persons of color.
Parents of children with rare degenerative diseases are justifiably excited at the prospect of treatment where there was none, and they’re in no mood to wait. Among its astounding range of possibilities, gene editing holds very real potential to halt cognitive and physical degeneration. I’ve sat with otherwise hopeless parents and heard their compelling argument for access to such unproven potential. As father of a child saved by visionary medical research, this is extraordinary to witness.
But where does this leave people of color, with ample reasons for distrust already; or people with disabilities, who hear aspects of their daily lives earmarked for elimination by the promise of gene editing; or those already choosing between the rent and prescription drugs. If they felt vulnerable before …
Vulnerability to reckless disregard for the humanity of research subjects — some of it, notably the Tuskegee syphilis study, with government backing — that led to the establishment of the first president’s bioethics commission in the 1970s. Subsequent commissions have diminished in impact over the years, and now have disappeared altogether.
My concern is less about where the science of gene editing is going than who will be its roadkill. Without care and oversight, disparities and distrust will only grow.
So read the Nuffield report, in summary or in full, and maybe view it as your own chance to play God.
Imagine: You can manipulate an infant’s DNA to avoid a lifetime (perhaps a short one) of pain and repeated disabling events. Or, you can decide that such genetic manipulation has gone too far already, and some other parent’s child is worth sacrificing for the good of society.
Which choice is in the child’s best interests? At some point, a judge will decide this, a scenario that makes Oxford philosopher Julian Savulescu wonder whether gene editing might one day become compulsory.
The choice isn’t so simple or stark as I’ve made it, but there is a big, ethically fuzzy area in between. So here’s a third choice: proceed with this science, so full of hope and possibility, provide real oversight, and engage the public in both.
The former will allow the science to proceed. Oversight will help enforce reasonable moral boundaries. And public involvement will help make it transparent and trustworthy.
So maybe what we need is a presidential commission on trust. If its priority was building public trust and being worthy of it, it would be a national ethics commission by default.
Either way, we need guidance from the top. Every president since Nixon has had a bioethics commission. Until this one.
In the way the Nuffield report considers rights and protections, puts conditions on researchers and factors in public trust, it reminds me of a thoughtful but controversial 2017 report on zika vaccine research from a panel gathered by the National Institutes of Health.
The Nuffield report is purely advisory. And yet I find it promising that the influential medical science journal The Lancet devoted these words to a recent cover: “A radical shift of life sciences funding priorities, away from the biomedical bubble and toward the social, behavioral and environmental determinants of health, is now needed.” The Lancet has more to say in an editorial.
This is encouraging — for England. But here?
There’s a truism in organizational ethics that if CEO doesn’t also stand for chief ethics officer — that is, ethics right from the top — then ethics is marginalized at best, futile at worst.
The website of the last president’s bioethics commission, complete with history of its predecessors, hasn’t been updated since the Obama administration. It is archived at Georgetown University.