Simon Burall Profile picture
Oct 26, 2019 27 tweets 15 min read Read on X
1/ it's the final session and final thread from me from

On the panel are: Bill Hurlbut (moderating), Jodi Halpern, @SJasanoff, Dianne Nicol, Rosemarie Garland-Thomson, Father Joseph Tham

#CrisprConsensus
@SJasanoff 2/ First up is Jodi Halpern restates the question about which publics we need to engage with depends on the purpose of engagement. A hierarchy of engagement: #CrisprConsensus
3/ Hierarchy from most problematic to least:
-To get acceptance of the technology - ie PR
-Extracting data from the public
-To have an interaction with the public to get buy-in
-Representation of the public in decisions
-Public interest

#CrisprConsensus
4/ education about the science should be a given #CrisprConsensus
5/ she's now asking how you support those who are vulnerable because political power won't protect them - and human rights has to be the basis she says #CrisprConsensus
6/ Engagement can't solve the problem of representing the views of those vulnerable groups where the majority thinks differently and this is why we need human rights as our lens #CrisprConsensus
7/ Next up @SJasanoff. This is the issue that has mobilised more views and perspectives than any other that she's seen. Sounds good, but need to unpack this... #CrisprConsensus
@SJasanoff 8/ ... she's noting that the group in the room is dominated by one group and people of colour are notable by their absence #CrisprConsensus
@SJasanoff 9/ Challenges - three Ds

Diversity - for some of these issues which are global we aren't citizens, but members of an individual nation, how create global voice? Most of these debates are framed by national concerns and legal structures #CrisprConsensus
@SJasanoff 10/ Drivers seat and who is in it? Science leads and the analyst follows. Rather than talking about genome editing, what if talked about human perfectability and what we need to do to achieve this. The news about shootings, migration etc is disconnected from GE #CrisprConsensus
@SJasanoff 11/ the idea of a global observatory proposed by her and Ben H is attempting to move away from the current very parochial debates, dominated by the west which is currently in the driving seat #CrisprConsensus
12/ I'm afraid I think I missed her third D, sorry #CrisprConsensus
13/ next up is Dianne Nicol, reflecting on public engagement she's done suggests the public are more concerned about the food they eat than the medications they take >I wonder if it depends on the type of benefit derived from the medication and who benefits? #CrisprConsensus
14/ "We may not achieve consensus, but we might find positions we can all live with" #CrisprConsensus
15/ Next up Rosemarie Garland-Thomson, she's bringing together her experience of studying disability, bioethics and eugenics #CrisprConsensus
16/ Next up is Father Joseph Tham. How can religious communities engage? Doesn't like the word consensus, conversation is better #CrisprConsensus
17/ he thinks religious voices are marginalised, partly because people fear sectarianism. Also religions haven't done a good job in keeping up with science, #CrisprConsensus
18/ he thinks that one problem with dialogues of the kind being talked about is that they look for a consensus about generalities, rather than focusing on the specifics of what different groups think and want> I'm not sure about this, it is certainly a risk #CrisprConsensus
19/ human aspirations to be better, immortal and so on are all questions that religions have looked at for a long time - they have something to add to the debate and should be part of it. Different and uncomfortable voices are good things he says #CrisprConsensus
20/ @SJasanoff notes that the 'edit' verb suggests that we know what the right change should be and this is questionable #CrisprConsensus
@SJasanoff 21/ Dianne Nicol highlighting the comment @YrachetaJM
made about the contribution that indigenous knowledge has made to the world but that the majority of the editing focusing on benefits for west #CrisprConsensus
@SJasanoff @YrachetaJM 22/ Rosemarie notes everyone will experience disability at some point --> a real advantage of having people with disabilities developing the technologies the majority will need. And some people with disabilities value their experiences for this reason #CrisprConsensus
@SJasanoff @YrachetaJM 23/ @g_levrier highlighting the rift between people working on bioethics vs bio politics, and a key question is how we design institutions to put into practice any decisions that are taken? #CrisprConsensus
@SJasanoff @YrachetaJM @g_levrier 24/ @SJasanoff thinks that bioethics can't be taken apart from bio politics, because it comes out of the tradition it is born from and therefore existing power structures are critical #CrisprConsensus
@SJasanoff @YrachetaJM @g_levrier 25/ @KeoluFox asking how we stop co-production being co-opted by those in power, who aren't really giving up power. How do you know when something is genuine vs being co-opted to get resources #CrisprConsensus
@SJasanoff @YrachetaJM @g_levrier @KeoluFox 26/ @SJasanoff agreeing with this, and saying we need to be critical when we hear the prefix 'co', co for who she asks? #CrisprConsensus
@SJasanoff @YrachetaJM @g_levrier @KeoluFox 27/ a participant "Technology can do almost anything except stop" indicating his wariness of the technology. >It is a critical question, and a good one to end on,

what would it take to stop gene editing if that is where the consensus lies?

#CrisprConsensus

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More from @sburall

Oct 28, 2021
1/ I'm sitting in on an @ifgevents live stream with @ICOnews's Elizabeth Denham instituteforgovernment.org.uk/events/elizabe… #IfGDenham

If there's something relevant from a public engagement perspective I'll add to this thread
2/ Some prepared remarks from ED first. The law worked best, she says, when the publics' views are put front and centre of any data use #IfGDenham
3/ Big things on her desk are #transparency, #AI #algorithms and #BigData < I wonder how many of those are big things from the public's perspectives? Suspect outcomes and impacts are much more relevant, less about data #IfGDenham
Read 12 tweets
Jul 8, 2021
1/ Looking forward to the launch of @GenomicsEngland's #newborndialogue report which starts in a few minutes. I'm going to be live tweeting. With over 1000 people signed up it's full, but you can follow along here
2/ The #newborndialogue was supported by @Sciencewise and you can find out more about the dialogue here sciencewise.org.uk/projects/whole…
3/ If you are interested in finding out more about @sciencewise and the support it offers government bodies to engage the public effectively, you'll find that here - sciencewise.org.uk/about-sciencew…
Read 67 tweets
Sep 22, 2020
Sitting in on the "Science and Society, 20 years on: legacy and lessons for a post-Covid world" conference. I'll try to tweet key points that strike me, but not live tweet to avoid spamming you buff.ly/3cnx13O 1/
Kicking off is @jameswilsdon reminding us that the reason for the event is that we are twenty years on since the House of Lords Science and Technology Committee published its seminal report on Science and Society. And the issues in there are still live publications.parliament.uk/pa/ld199900/ld… 2/
3/ @jameswilsdon is aiming for an honourable mention by @BCredibility ....
Read 72 tweets
Aug 24, 2020
1/ The question about whether and how we should open schools is real and live uk.news.yahoo.com/seventeen-teac…

How do we balance the educational needs of children against
i. the health needs of teachers,
ii. the health needs of the wider population
iii. the wider economic impact?
2/ Whatever we decide will entail difficult choices which will affect different groups differently, in different ways and over very different timescales. At its starkest, the longer term education of our children vs short term economy?

What a choice, what an awful choice.
3/ But we need to make it, not debating it and trying to ignore it doesn't make the choice go away, it is just made by default, by the virus in fact
Read 6 tweets
Aug 6, 2020
The Patch (@BBCRadio4) is a wimsical little programme set around the conceit of investigating a random postcode every episode 1/
The Patch just tackled homelessness in a time of Covid in London’s Square Mile bbc.co.uk/sounds/play/m0… 2/
The Patch just did for my understanding of homelessness what I think BBC news programmes and esp @BBCr4today should be doing day in day out instead of stupid short gotcha interviews presenting false balance 3/
Read 6 tweets
Jul 25, 2020
I share your sense of outrage at what is happening in Portland. But I think that to blame deliberative democracy is to misunderstand what democracy is 1/
2/ Democracy isn't one thing. Here in the UK, through the 80s and 90s, those campaigning for greater democracy were focused on institutions: establishing a constitution, proportional representation, an elected House of Lords etc
3/ All of these things are important components of democracy, but they won't magically transform the UK into some sort of utopian democracy. Not on their own, and not even if they all happened
Read 9 tweets

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