Thread by @sburall

1/ I'm at #CRISPRconsensus symposium all day. I'm afraid this means one of those live tweeting marathons. Feel free to mute me for 24 hours! It's being live streamed if you're interested, just register. Starting in 15 mins innovativegenomics.org/crispr-consens…

2/ #CRISPRconsensus is going to start in about 5 minutes or so, lots of tech being wrangled right now. But you can watch the live stream here too by the look of it youtube.com/playlist?list=…

3/ Ben Hurlbut, we're here because the technology is so powerful and controversial. Most controversial are human germline editing, ie DNA editing that can be passed on to future generations #CRISPRconsensus

4/ Raises questions on what should and shouldn't be allowed, who should decide etc.

Ben mentions international symposium a few years ago which concluded germline editing shouldn't be allowed until there is a consensus about what should be allowed & what not #CRISPRconsensus

5/ but this raises questions as to whether international consensus can be achieved, and how.

Expert contribution will be part of this, but need broader public dialogue: how, who should lead it, how are the scientific and policy issues going to frame (or not)? #CRISPRconsensus

6/ This symposium was meant to be much larger with 300 members of the public, but the power company is shutting down the power and so had to move to a much smaller room - and public has been excluded, ironically Ben notes #CRISPRconsensus

7/ Lea Witkowsky going through the science now, but noting that we don't need much science to engage with the debate. I think this is critical, the debate is SO much more than DNA science, it's about the intersection of science and society... #CRISPRconsensus

8/ ... it's about our lives, the impact it will have on our health systems, our law, and economic systems, it's about society, morality, economics and governance #CRISPRconsensus

9/ Who is in the room? #CRISPRconsensus

10/ first panel consisting of @sxbegle, @KeoluFox, @IBioethics, Billie Liangoloum, @TaniaSimoncelli, @Wolbring (online and currently disappeared!) #CRISPRconsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 11/ Panel focus is "Human Germline Editing: What Is at Stake, and Who are the Stakeholders?" #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 12/ @sxbegle referencing film about to come out, and a teenager asked if he would accept germline editing to stop his children getting sickle cell disease, after some thought he said "I wouldn't be who I am without the disease" wondercollaborative.org/human-nature-d… #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 13/ What is consensus she asks, it can't be two wolves and one sheep voting on what to have for dinner #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 14/ Next up is @Wolbring, we are all stakeholders he says > absolutely, totally agree with this. Highlights need for society wide dialogue and involvement in decisions #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 15/ he is talking us through how viewing the world through ablism (ie from view of those without disability) can cut people out of the debate #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 16/ he's noting the number of barriers there are, esp for people with disabilities, to take part in the debate #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 17/ Next up is @IBioethics asking where islamic bioethics might add value to the debate. He notes that his position is the only one in the islamic world, mostly ethics sits within the religious domain #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 18/ There are some transnational/islamic institutions which have been deliberating on genomics since the 1990s. Early on discussions focused on the human genome project - should muslim countries be part of this project #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 19/ early 2010s discussion changed, joining the human genomic revolution is the right thing to do, and should be a collective effort, so question is now how this should happen, how to manage the ethics etc #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 20/ there is a diversity of opinions and indeed conflict, even about the questions, just as there is in the west he notes > it's telling that he feels the need to say this, and probably not surprising given portrayal of islam in the media #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 21/ he says that islam doesn't prohibit research which is about seeking knowledge, but in terms of application there is a differentiation between somatic (more open) vs germ line (open if for medical, but much less if for enhancement) #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 22/ Next up is @KeoluFox "I'm not a bioethicist, I'm just Hawaiian" #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 23/ he's thinking about using this tool to change history, 90% of genome sequencing been done on western European ancestory, as have tests and experiments. And so this is cutting majority out #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 24/ and the narratives that we're using to understand the technology, it's uses and implications, is embedded in racism, eg discovery of "thrifty" gene in Polynesian people focuses on one narrative about origin stories, rather than the history of colonialism #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 25/ and need to be wary of people wanting to create intellectual property claims around specific mutations - what if a mutation exists in an indigenous people's genome, what does it mean for economics, who would benefit? #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 26/ there's a patent claim without any Polynesian names on it, for example #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 27/ to solve this problem, need an infrastructure for self-governance - create a biorepository for indigenous people, create server farms and algorithms for investigating for these communities, build capacity to do this #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 28/ next up is Billie Liangoloum, a genetic counsellor, being asked about health tourism for a treatment banned in the US - in this case to treat mitochondrial disease #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 29/ focus of work is with parents who are pregnant, but key investigation is to explore whether in-utero therapy could be used to treat child, earlier than after birth #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 30/ she's now referencing netflix.com/title/80208910, and talking about a mother asking why there isn't a patient who is black, and noting that this raises questions about the challenge of some groups to access care #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 31/ and she links this back to the history of medical science's treatment of minority communities >absolutely part of the debate already - see one of my RTs in last 10 days raising important challenges (I'd try to find it but then I'd lost the thread here!) #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 32/ "the old fashioned way of getting pregnant", what, wait? #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 33/ conversation now moving directly onto eugenics, and rather than this being governments attempting to decide, now we have the potential of parents choosing what kind of child to bring into world #CrisprConsensus

@sxbegle @KeoluFox @IBioethics @TaniaSimoncelli @Wolbring 34/ and there's a risk, says @sxbegle, of parents choosing to have a child with severe disabilities being accused of making the wrong choice > implying we'l have moral pressure for eugenics #CrisprConsensus

35/ and all this is also tied up with the debate about rights to choose > adding significantly more fire to the debate #CrisprConsensus

36/ > this session hasn't addressed the question of who the stakeholders are, but exchange that's just gone on notes that the 'disabled community' isn't monolithic in relation to whether to terminate or not....#CrisprConsensus

37/ ... highlighting that having one or two people with disabilities in a conversation isn't bringing in all of a certain type of stakeholder. Need to start thinking in terms of diversity of view as much as ensuring 'representation' of specific groups #CrisprConsensus

38/ Q time: "what does informed consent look like in an age with crispr?" People need to know what is being looked for, before looking for it and aiming to treat it. We don't know downstream concs yet and so informed consent has to wait #CrisprConsensus

39/ Q: is there a single position on abortion in islam?

A: pro-life vs pro-choice doesn't exist. 120 days, calc from moment of conception vs after that. After this period the embryo has human life rather than just life, ie a soul. #CrisprConsensus

40/ Q: "how do you include the next generation in the debate?"

A: in the islamic tradition differentiates between those with legal capacity and those not; guardians can give proxy consent, although now becoming clear more challenging, it can't be reversed later #CrisprConsensus

41/ Q: "indigenous communities poss small, how do large scale experiments needed"

A: current attempt in US trying to sequence 1m genomes, will over select for minority communities. Good intention to treat minority disease, but undermines community sovereignty #CrisprConsensus

42/ Q: 90% of genome catalogued is w European, as climate crisis becomes more acute, crops and bodies adapted for more extreme environments are going to be more in demand. What about the power imbalance" #CrisprConsensus

43/ it's time for a break, phew you breath. I'll be back though with a new thread for the next session #CrisprConsensus