Thread by @sburall

1/ this is thread 3 of #CrisprConsensus

This panel is on "Bringing in the Public: Platforms and Pathways for Public Engagement and Debate"

It's a panel in two parts. Part 1 feat @JulieShapiro, @JennyMerchant, Katie Hasson, @samira_kiani1, Kelly Ormond

@JulieShapiro @JennyMerchant @samira_kiani1 2/ part 2 of the panel feat @JulieShapiro, Henrietta Hopkins from @HopkinsVanMil, Micheal Flaherty, @pembertonfilms, g_levrier and me, so I won't be live tweeting you'll be pleased to hear #CrisprConsensus

@JulieShapiro @JennyMerchant @samira_kiani1 @HopkinsVanMil @pembertonfilms 3/ @JennyMerchant up first, she's going to be talking to us about Arrige which is an association focusing on responsible genome editing, est 2018 arrige.org #CrisprConsensus

@JulieShapiro @JennyMerchant @samira_kiani1 @HopkinsVanMil @pembertonfilms 4/ Next it's Katie Hasson from Center for Genetics and Society, aiming to bring a social justice perspective into debates about genomics. Key q for them is who decides and how. Engagement should lead to shared decision-making #CrisprConsensus

@JulieShapiro @JennyMerchant @samira_kiani1 @HopkinsVanMil @pembertonfilms 5/ scientists and bioethicists shouldn't be the ones deciding which questions the public should answer, it must be much more open >spoiler, this is what I'm going to focus on in my short presentation #CrisprConsensus

@JulieShapiro @JennyMerchant @samira_kiani1 @HopkinsVanMil @pembertonfilms 6/ she notes that the public isn't an undifferentiated mass whose opinions can in some way be tallied >this can't be said enough #CrisprConsensus

@JulieShapiro @JennyMerchant @samira_kiani1 @HopkinsVanMil @pembertonfilms 7/ this means bringing in civil society, thought of in a wider way. They've done this in a number of ways including webinars or offiline, #CrisprConsensus

8/ this engagement at the history of these debates pre-dating gene editing, the social and economic contexts where editing is happening, social justice, intersecting issues eg climate, #CrisprConsensus

9/ Next up is @samira_kiani1 looking at how to engage widely. She's a genetic engineer and video maker. See #codeofthewild which is being connected to an online platform which allows you to share and discuss different elements of the video #CrisprConsensus

@samira_kiani1 10/ This means you can republish your own version of the film as a response back to the original video, aiming to develop a two way conversation >wow, the potential seems amazing #CrisprConsensus

@samira_kiani1 11/ next up is Kelly Ormond is an ethicist and genetic counsellor. They've been doing empirical research on ethics and what different groups think about gene editing #CrisprConsensus

@samira_kiani1 12/ in 2016 surveyed attitudes of global gene ethicists, and most of them are supportive of somatic research and clinical use. Only 32% were supportive of clinical translation of human germline research - they thought this was high, but may explain later events #CrisprConsensus

@samira_kiani1 13/ Also surveyed people with inherited retinal conditions and those who had acquired them later, and found that individuals answered the questions through their own life experience >so responses v varied #CrisprConsensus

@samira_kiani1 14/ and find that families with children with disabilities have conflicting and conflicted views. Esp where children had a good quality of life but it was limited #CrisprConsensus

@samira_kiani1 15/ Oh, Ben Hurlbut is also on the panel and is going to be talking about his and @SJasanoff's idea for a global observatory, which is trying to expand the idea of what society is, of the types of questions which must be asked etc #CrisprConsensus

@samira_kiani1 @SJasanoff 16/ this observatory needs to involve people with multidisciplinary backgrounds, it needs to bring people who don't normally engage together, and it must be cross-cultural #CrisprConsensus

@samira_kiani1 @SJasanoff 17/ This is laid out in their Nature article nature.com/articles/d4158… #CrisprConsensus

@samira_kiani1 @SJasanoff 18/ this observatory will collect more perspectives; analyse the foundations of peoples' thoughts; convene excluded voices beyond science and ethics professionals #CrisprConsensus

@samira_kiani1 @SJasanoff 19/ Now we're moving to the Q&A session.

Q: how stop the participants in your work from self-selecting and how you take account of it when you're analysing what you're hearing #CrisprConsensus

@samira_kiani1 @SJasanoff 20/ A from @JennyMerchant: trying to engage people who don't normally, so providing grants for people to come from low and middle income countries #CrisprConsensus

@samira_kiani1 @SJasanoff @JennyMerchant 21/ A from Kelly Ormond: interpreting work requires you to seek data saturation, and also acknowledge the limitations of your work #CrisprConsensus

@samira_kiani1 @SJasanoff @JennyMerchant 22/ Q: is the right starting point for the conversation germ line editing?

A: Katie Hassan: the conversation about germ line editing is broader than this, it's about visions for the future, histories of injustice etc, so starting somewhere is a way of expanding #CrisprConsensus

@samira_kiani1 @SJasanoff @JennyMerchant 23/ and need to start from where publics have an expertise and start from there >big +1 from me on this too #CrisprConsensus

@samira_kiani1 @SJasanoff @JennyMerchant 24/ @samira_kiani1 is looking forward to following how the debate changes on her platform over time, in an attempt to see how it shifts over time #CrisprConsensus

@samira_kiani1 @SJasanoff @JennyMerchant 25/ the critical question for me now being asked: how is this engagement going to affect decision-making? #CrisprConsensus

@samira_kiani1 @SJasanoff @JennyMerchant 26/ The focus of the answers is on making sure that decision-makers are aware of the engagement, and amplifying voices not normally heard, trying to support scientists understand the public and visa versa #CrisprConsensus

@samira_kiani1 @SJasanoff @JennyMerchant 27/ and a critical question when you're thinking about how to get action on what the public are saying is also who is making the decisions, implying that power needs to shift, #CrisprConsensus

@samira_kiani1 @SJasanoff @JennyMerchant 28/ Q:is it possible to separate what people think is right or wrong, from what the government should decide about what should be legal or not

A: Kelly did survey part of this, but sorry, missed the nuance of her answer #CrisprConsensus

29/ There's a question online about the role of fiction, can it accurately represent the science and support engagement?

A: Can be an entry point, but it must be supplemented so that minor details don't overwhelm the discussion #CrisprConsensus

30/ we shouldn't just worry about narratives that raise fear, but also those that raise false hope, or hype the benefits #CrisprConsensus

31/ So I'm on the next panel, here's a way in to much of what I'm going to be saying nature.com/articles/d4158… #CrisprConsensus