Kai Kupferschmidt Profile picture
Mar 6 21 tweets 11 min read
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
@TheCrick Great talk by @DrJoyZhang.
She sees three major trends in Chinese regulatory landscape around human genome editing:
- securitisation
- ethicisation
- bottom-up participation
@TheCrick @DrJoyZhang Securitisation:
"I think the most important regulatory change China had since 2018, is the fact that genetic research now is a matter of national sovereignty and national security and this has led to the introduction of a number of gatekeeping policies"
@TheCrick @DrJoyZhang "I think securitization as such, may not necessarily introduce a safe, orderly development of science. On the contrary, I think it can be quite obstructive", says @DrJoyZhang
@TheCrick @DrJoyZhang Ethicisation:
Idea that "ethics precedes technology" has been officially adopted in China: "This officially overturns what I termed the post-hoc pragmatism that used to trivialise ethical debates as a distraction and has dominated China's science for almost 40 years."
@TheCrick @DrJoyZhang BUT: industry-led research largely left out. "I think all those new policies although they introduced a very significant upgrade, are not sufficient and I worry that very soon, they're gonna struggle with burgeoning market-led research"
@TheCrick @DrJoyZhang Bottom-up participation is also becoming more important in China, says @DrJoyZhang. "A fragile process but it CAN make a difference"
@TheCrick @DrJoyZhang "In the West there's still a very dominant misconception that all academics in China are submissive and uncritical. Well, they're not and they can make a difference. I think the best way to promote good governance in China is to have these diverse voices, at least acknowledged."
Good overview of the state of gene editing technologies in mammalian cells by @davidrliu Image
@davidrliu Gene editing techs are "the fruits of an ongoing 70+ year old quest to develop one of the most fundamental capabilities of humanity: the ability to have some say in the sequence of our genomes so that we are no longer so beholden to the misspellings in our DNA", says @davidrliu
@davidrliu There was a brief press huddle with Victoria Gray in the break just now, a mother of four who has undergone gene therapy to cure her sickle cell disease.
I asked her what influenced her decision: "In the end, really, my decision to do it was based on my kids", she said.
@davidrliu "I want to be here to be a part of their lives", she said. "Because I have four children and I want to be able to dress my daughters for their weddings, be there when they sign up for college and just experience life with them. So that outweighed all of my other fears" #HGESummit
@davidrliu Research itself has to be equitable, says Jantina deVries. "If we do not include everyone in the science that we do, we simply will end up and have historically ended up with innovations that work for some and not for everyone."
#HGESummit
Natacha Salomé Lima in the following talk gives an example: 79% of all participants in genome-wide association studies are of European descent, yet they only make up 16% of the global population. Image
.@FilippaLentzos starts her talk on security aspects of gene editing with a photo of Macron/Putin meeting at a large table last year and notes Macron refused to take Russian PCR test apparently out of fear his DNA would be "stolen". Image
@FilippaLentzos Scientists "are not blind to these security risks and to the risks of working with the wrong people", says Lentzos. But few researchers think the risks apply to their research. "We need to gently cautiously responsibly raise awareness of the security dimension of genomic science"
@FilippaLentzos Main points Ping Yan makes in her talk:
- there is broader involvement than commonly appreciated in China
-"China with its experiences of coping with the event, is an indispensable parter for global governance."
("the event" = He Jiankui's work)
#HGESummit
Can’t access the wifi anymore, so no live tweeting for now… :/
At least my cellular network is back. Powerful talks in the meantime by Victoria Gray, Melissa Creary, Gautam Dongre amongst others
Here is a thread on Victoria Gray’s talk:

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More from @kakape

Mar 8
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.“ Image
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
Read 4 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 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
Feb 26
Here are the details on the Cambodian #H5N1 cases from @WHO:
An 11 year old girl fell sick February 16, died February 22
Her father is positive, but asymptomatic and in isolation
11 other close contacts tested negative

Virus belongs to clade 2.3.2.1c

who.int/emergencies/di…
“A joint animal-human health investigation is underway in the province of the index case to identify the source and mode of transmission. Additionally, a high-level government response is underway to contain any further spread of the virus.”
“Currently, there is no vaccine widely available to protect against avian influenza in humans. WHO recommends that all people involved in work with poultry or birds should have a seasonal influenza vaccination to reduce the potential risk of reassortment”
Read 5 tweets
Feb 24
Cambodia has informed @WHO of two confirmed cases of #avianinfluenza #H5N1, an 11 year old girl that died and another member of her family, @SCBriand just said in a @WHO press conference. Field investigations are going on, she said.
@WHO @SCBriand It's crucial, of course, to learn more about what exactly happened incl. whether there are other possible cases, how the cases were infected and whether there was any human-to-human transmission.
Read 10 tweets

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