Discover and read the best of Twitter Threads about #HGEsummit
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As someone who mostly covers #globalhealth, I find it remarkable that the closing statement of #HGESummit specifically addresses "Equitable access for somatic human genome editing".
So let me quote that part here in full:
So let me quote that part here in full:
"As interventions based on somatic genome editing become more widespread, a commitment to equitable, financially sustainable, and accessible treatments becomes more urgent."
"In many cases, costs and infrastructure needs of current gene therapy treatments are not manageable for either patients or healthcare systems."
After three days of talks at the #HGESummit, Robin Lovell-Badge now reading closing statement:
"Remarkable progress has been made in somatic human genome editing, demonstrating it can cure once incurable diseases. To realise its full therapeutic potential, research is needed to expand the range of diseases it can treat, and to better understand risks and unintended effects
"The extremely high costs of current somatic gene therapies are unsustainable. A global commitment to affordable, equitable access to these treatments is urgently needed."
Session now on "Are there compelling reasons for heritable human genome editing?" at #HGESummit. Ephrat Levy-Lahad giving an overview of global regulation first:
„There's not a single country where heritable genome editing is currently permitted.“
„There's not a single country where heritable genome editing is currently permitted.“
This probably does not reflect universal opposition to the technology, but rather current limitations, she says, „in particular, the realisation that there is still a major issue of safety and clinical application would not take place until these issues are resolved“
But that means we have an opportunity now to discuss what happens if safety were achieved, she says. „I realise this is a big if, but we need to start thinking about it.“ #HGESummit
Day 2 at #HGESummit at @TheCrick. It will be another full day
@TheCrick Patient groups were much more active around gene editing five, six years ago, says @MBoudes. Says he does not know why. "I hope to find the answer from the discussion with my fellow speakers and also from the audience." #HGESummit
@TheCrick @MBoudes "The reason I ended up in patient advocacy and sitting here is unfortunately a very personal one", says @BettinaRyll. She was working as a scientist when her husband was diagnosed with melanoma. "we were told ... I'm sorry, it is cancer. And there is nothing we can do for you."
#HGESummit Day 2 thoughts below🧵⬇️
Starting with an exhibit at @TheCrick asking visitors for their perspectives on gene editing. The range of responses shows the need to keep having these tough conversations - with everyone who has a stake in the discussion.
Starting with an exhibit at @TheCrick asking visitors for their perspectives on gene editing. The range of responses shows the need to keep having these tough conversations - with everyone who has a stake in the discussion.
(2/🧵) I wish I had enough characters for all of @BettinaRyll ‘s comments about communities’ roles in setting research agendas. I’ll pick one that resonated deeply - “Scientists are part of civil society, too.”
#HGESummit 🧬
#HGESummit 🧬
One more, because @BettinaRyll ‘s message was so powerful, “if our model systems are homogenous cell cultures kept in plastic dishes, we shouldn’t be surprised that our translational gap is so large.” Patients are people, not model organisms.
#HGESummit 🧬
#HGESummit 🧬
@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
@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 🧬
#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 🧬
#HGESummit 🧬
In London at @TheCrick to attend the Third International Summit on Human Genome Editing. Should be an interesting three days. #HGESummit
@TheCrick "China has considerably improved its legislation and regulations regarding life sciences, including human genome editing, over the last several years", says Yaojin Peng at #HGESummit.
@TheCrick China is increasingly approaching governance of biotechnology research from a precautionary perspective, he argues.
And: "China's legislation regarding human genome editing is basically in line with internationals standards." #HGESummit
And: "China's legislation regarding human genome editing is basically in line with internationals standards." #HGESummit
