Even Gene Editors Need an Editor

During the international conference that went by the hashtag #GeneEditSummit, a message on Twitter thanked the Center for Genetics and Society for a clarification: “I know @C_G_S understands my views. But it came out sounding like the opposite.”

Funny how that happens. One might call it an off-target consequence.

Take the official statement that concluded the International Summit on Human Gene Editing in Washington, D.C. (aka #GeneEditSummit).  

You could read the statement in several ways, and that’s how it has been read. Science News reported that human gene editing was given “a green light. The Guardian agreed: “Summit rules out ban.” “No ban, no moratorium,” medical science reporter Lisa M. Krieger tweeted.

But if they’re correct, then explain the New York Times headine: “Scientists Seek a Moratorium on Editing of Human Genome.” The blogging stem-cell scientist Paul Knoepfler tweeted: “Geez. Nicholas Wade misses boat on #GeneEditSummit.” 

Perhaps the confusion is best explained by an exchange toward the end of the summit, when organizers were asked if their statement might be translated into clearer language more easily understood by the public. To which Dr. David Baltimore, principle organizer of the summit and former president of CalTech, said: “You mean it isn’t?”

See for yourself here. 

Baltimore deserves praise him for orchestrating an important three-day conversation that was truly international on a morally, culturally divisive issue — determining appropriate use of emergent technology capable of altering genes in a way that might cure diseases such as HIV, hepatitis-B and sickle cell anemia. Done equitably, few would argue against it. 

The technology also holds the potential to make a range of changes that could be passed on to future generations. This tends to freak people out — notably, those non-scientists whom Baltimore and his colleagues need to learn to communicate better with.

And yet the summit was a good start on the path to trust and social buy-in for such scientific research, and future public engagement planned by the National Academies of Science holds promise.

One of the first criticisms of the summit was how long it took to get a woman to the podium. One of the last concerned the marginal role of religion. That might be understandable in the context of the largely secular world of science, but to have any hope of broad public support on questions that are at least as much about values as science, that can’t persist.

It wasn’t until the final panel on the second day of the summit that religious values were broached. Speaking of his country, a Nigerian hematologist and panelist said: “We are a religious people. We like to pray.” The hall was almost churchlike in response. But one thing the tool known as CRISPR will never successfully edit out of the dialogue is religious values, and when it tries, the off-target cost could be social buy-in. 

Bringing religion into this dialogue will never be easy. Which one? Will it have to pass an evolution litmus test? Swear an oath to embryonic research? Complicated, indeed.

Good, though, that the dialogue has begun.

Getting a Handle on CRISPR/Cas9 (Part 2)

Takeaways from Day 2 of the International Summit on Human Gene Editing. The challenge: Not devoting all of them to legal scholar and doctor of irony Barbara Evans.

(Bios here: http://nationalacademies.org/gene-editing/Gene-Edit-Summit/index.htm)

1. Barbara Evans’ scenario: Couple meets for a date. One says to other: BTW, I’ve had my genes edited. #FutureImplications
2. Janet Rossant, Toronto Hospital for Sick Children: “It’s absolutely our responsibility” to engender public buy-in and trust.
3. In France, UK, US, no plan to launch public debate on gene editing. “It might be a good idea.” (Jennifer Merchant)
4. Listening & wondering: Is germ-line editing a distraction?  The breakthroughs and greatest uses will come with  somatic cells, which are much less ethically suspect. 
5. Yes! Molecular biologist Thomas Reiss makes a case for accessible language (and uses it himself). #HealthLiteracy
6. “What is needed is a very authentic form of public engagement,” requiring that“science learns to communicate with public.” (Keymanthri Moodley, S. Africa) 
7. One concern in a “wild wild west” of gene editing: medical tourism.
8. One concern if there’s a moratorium: “It will only limit the legitimate science” (Ephrat Levy-Lahad, Israel)
9. International regulation would discourage medical tourism, but hard to respect social, cultural and moral/ethical differences among countries.
10. An ethics question: Does principle of double effect have anything to say about the problem of off-target modifications?
11. Public health disease burden in settings such as Sub Saharan Africa is high priority. Hepatitis B and HIV have treatments, not cures, possibly creating a moral imperative for somatic gene editing.
12. Context: In a 6 billion character, 1.1-million page Book of Genome, a single typo causes the disease. (Matthew Porteus)
13. @rocza points out, “a lot of the #GeneEditSummit debate is about values, not science. We need to NOT pretend otherwise.”
14. Can regulation catch up with the science? Would that be a good thing?
15. Barbara Evans again: “The science of regulation is more precarious than the science of gene editing,”
16. Day’s last panel a true international summit: Nigeria, Germany, France, Israel, S. Africa, Sweden, India. 
17. How to silence a room full of scientists: “We like to pray.” (Fola Esan, Nigeria)
18. Religion wasn’t mentioned until Day 2’s final panel (which then was cut short): “Nigerians are deeply religious people.” Nigeria also has high maternal & child mortality and high sickle cell. Again, moral imperative.

Getting a Handle on CRISPR/Cas9

One day into the International Summit on Human Gene Editing in Washington, D.C., I’m struck by how easy it is for a lay person (namely myself) to get lost in the science. That gulf in comprehension complicates the effort to earn public buy-in and trust for use of the new technology.

This summit has brought together policymakers, scientists and ethicists from China, the United Kingdom and the United States in a quite extraordinary attempt to understand and possibly assign limits to the use of emerging technologies that can be as morally troubling as they are scientifically promising. 

It was heartening to hear, early in Day 2, a call for scientists to take responsibility for helping the public understand both the profound benefits and considerable risks inherent in the new gene-editing technology.  (If “Aldous Huxley” and #BraveNewWorld are trending this week, this is why.)

The summit continues today and Thursday, and is available live via webcast.  

I’m especially looking forward to Thursday morning’s session titled “Interrogating Equity.”

What follows are a layman’s takeaways from Day 1, a webcast of which is available for viewing here: 

1. Predicting outcome in a Twitter word count: Yes to treating, curing humans. No to altering humanity.
2. When a child’s leukemia is effectively treated in a new way, there is broad public support. 
3. Questions: When is CRISPR/Cas9 safe to use? When is it therapeutically justified? (Answer unclear as yet)
4. To paraphrasing one presenter: Our capacity for manipulating is greater than our understanding.
5. With gene editing, the shadow of eugenics is unmistakable & maybe unshakable.
6. In that context, “That was then, this is now” is not a convincing argument.
7. It took 90 minutes to hear from the first woman (Alta Charo, U of Wisconsin).
8. The challenge of getting CRISPR/Cas9 to behave: “Off-target modifications” are at heart of concern. Translation: Beware of unintended consequences and collateral damage.
9. Favorite moment: Physicist Jonathan Weissman of UC San Francisco likening gene editing to volume control. Weissman’s dial goes to 11. #SpinalTap @ #GeneEditSummit
10. In helping the public understand, @pknoepfler’s blog is a good model: 

One last thought: This summit in itself is a good step on the path to social buy-in.