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.