Thread by @steph_batalis

@clschuerger and I have arrived at @TheCrick for the Third International Summit on Human Genome Editing 🧬- thoughts, takeaways, and highlights to follow (1/🧵)

@CSETGeorgetown
#HGESummit

(2/🧵) @DrJoyZhang: regulatory changes in China since 2018 have been “significant, but not sufficient” - future efforts need to acknowledge diverse voices in China

#HGESummit 🧬

(3/🧵) Overview from @davidrliu: the current toolbox of programmable gene editing technologies has different uses for therapies that require gene disruption vs. gene correction

#HGESummit 🧬

(4/🧵) inequities to gene therapy access will widen due to high treatment cost, global policy asymmetries, and a lack of diversity in genetic databases

#HGESummit 🧬

(5/🧵) Kelly Ormond brings up concerns about how gene therapies could impact society’s tolerance for disability and disease; patients, parents, and medical providers have a range of opinions on when and how gene editing should be used

#HGESummit 🧬

(6/🧵) Speaking about genetic data privacy, @FilippaLentzos asks “What does our DNA reveal, other than who we’re related to, and what we may look like?” The answer…a lot. Ethical discussions of gene editing need to include data security.

#HGESummit 🧬

(7/🧵) An overarching theme: “ethics” involves making value judgements, which vary across countries, cultures, and lived experiences. How does your concept of “personhood” inform your perception of gene editing, and how is that different from your neighbor’s?

#HGESummit 🧬

(8/🧵) @juliemakani opened the afternoon session by saying “In 2003, we could not talk to our patients about curative therapies” for Sickle Cell Disease. Now, Victoria Gray receives a standing ovation after discussing how curative gene therapy changed her life.

#HGESummit

(9/🧵) @MelissaSCreary and @GN_Gautam add that it’s not that simple - who do gene therapies help if patients can’t access them? “Pharmaco-equity” is as, if not more, important as developing cutting-edge scientific technologies.

#HGESummit 🧬