Kai Kupferschmidt Profile picture
Mar 8 11 tweets 4 min read
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.“
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
Levy-Lahad argues that in social contexts where having a biological family is a big imperative, infertility „could become a compelling reason for heritable genome editing“ IF the technology is safe (and other guiding principles met). #HGESummit
Interesting ethics talks by @CPalaciosG and Tina Rulli. Rulli‘s basic argument is that reproductive genome modification does not cure a disease in someone that already exists. Instead without it a child would likely not be born.
„It's just part of a reproductive decision to create a baby free of some specific disease that's different than curing a baby who would otherwise be sick from a disease“, says Rulli. #HGESummit
Given this and that most parents have other options available (like pre-implantation diagnostics), „the social value of reproductive genome modification simply falls far below a threshold of social value in a world with many unmet medical needs“, says Rulli. #HGESummit
A large part of Rulli‘s argument is about where we put our energy and resources as a society: „We need to look at addressing needs that affect a large number of people and/or are life threatening because we have a lot of those which are underfunded as well.“
Before Rulli, @CPalaciosG took on some of her argument pointing out that in some cases the decision to use crispr might only be made after the creation of the embryo. So in some cases you can call heritable genome editing „a therapy“ he contends
Fascinating to hear these different takes on hereditary genome editing. I wish more scientific conferences created a space for debates like this. I do think everyone profits from hearing people who have thought deeply about these issues but from vastly different perspective.
Curious detail in Kyle Orwig‘s talk on editing spermatogonial stem cells: Apparently there's an abundance of genes that are important for sperm formation located on the X chromosome. Curious what the evolutionary story might be behind this…

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More from @kakape

Mar 8
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:
"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."
Read 10 tweets
Mar 8
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."
Read 7 tweets
Mar 7
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."
Read 38 tweets
Mar 6
In London at @TheCrick to attend the Third International Summit on Human Genome Editing. Should be an interesting three days. #HGESummit Image
@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
Read 21 tweets
Mar 3
Vor zwei Wochen habe ich mich in Berlin mit @jeremyfarrar getroffen. Er war auf dem Weg zur @MunSecConf und wir haben über Covid und H5N1 gesprochen und darüber, was Terroranschläge und Pandemien verbindet…

Wer fürs Wochenende noch was zum hören braucht:
superelektrik.de/pandemia/updat…
Zu Covid:
Farrar sagt, er trage in öffentlichen Verkehrsmitteln noch immer Maske. „Aber es stört mich nicht, dass die meisten anderen Menschen das nicht tun.” Im Großteil der Welt sieht er keine Notwendigkeit mehr für Einschränkungen.
Die Welt darf aber nicht vergessen, dass das Virus auch noch einmal eine böse Überraschung bereit halten könnte, sagt Farrar. Das Virus müsse darum weiter überwacht werden. „Leider haben viele Länder die Überwachung eingestellt und ich denke, das ist ein Fehler.“
Read 19 tweets
Feb 28
Two weeks ago I met with @jeremyfarrar to talk for our @pandemiapodcast.
He was on his way to the @MunSecConf and we discussed Covid, H5N1 and what connects those trying to prevent acts of terror and those fighting pandemics

Episode (in German) is here:
superelektrik.de/pandemia/updat…
@JeremyFarrar @pandemiapodcast @MunSecConf On Covid:
Farrar says he still wears a mask on public transport. "But it doesn't worry me that most other people don't. There's no need, in my view, in most of the world for any restrictions."
"We're in a good position", he says.
@JeremyFarrar @pandemiapodcast @MunSecConf "But we cannot leave open the nonzero chance of something bad happening", says Farrar. "And in my view, what that means is continuing surveillance. And unfortunately, many countries have stopped surveillance and I think that's a mistake."
Read 18 tweets

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