Thread by @sburall

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…

4/ Although I'm currently in the lobby for the #newborndialogue, this would normally be the time to catch-up with people, meet new people, but instead I'm twiddling my thumbs!

5/ struggled to get into the launch, but now in and first up is @vivienneparry who is making the point that this is about newborn screening, and not antenatal screening, that's a whole other thing #newborndialogue

6/ she makes the point that we're not getting newborn screening next week, lots more work needs to happen first. #newborndialogue

7/ Next up is Anne Mackie director of Screening for Public Health England, she's being asked by Viv about the science. She's noting that newborn screening will help identify more conditions than we currently can #newborndialogue

8/ it moves beyond current testing which looks for specific illnesses, to whole genome screening offering the chance to pick-up on many other genetics diseases #newborndialogue

9/ Next speaker (sorry missed his name) going through recent history of screening. Noting that there might be up to 600 conditions which could be identified through newborn screening which can be easily treated #newborndialogue

10/ Viv pushing on what sorts of conditions will be picked up, it isn't about late onset disorders and it isn't about generating risk scores. Newborn screening aims to identify disease which are highly likely to occur #newborndialogue

11/ and it may help us identify new therapies too, including new genetic therapies too #newborndialogue

12/ if you want to read the full report you'll find a link in this press release genomicsengland.co.uk/public-dialogu… #newborndialogue

13/ next up is Felicity Boardman from University of Warwick. She carried out a literature review of public attitudes to whole genome sequencing in newborns, noting that there isn't much from UK #newborndialogue

13/ next up is Felicity Boardman from University of Warwick. She carried out a literature review of public attitudes to whole genome sequencing in newborns, noting that there isn't much from UK #newborndialogue

14/ She's going through the issues she identified in the review
- whose benefit is it for? The baby or others? How prioritise these
- how deal with the volume of information that will be generated #newborndialogue

15/ - how to ensure consent
- how to ensure privacy and data security

This review will be written up and available. It informed the public dialogue supported by @sciencewise and specifically ensured that dialogue focused on a number of issues... #newborndialogue

16/ ... specifically what sort of test results people want to see and would find useful. This relates to the question of consent, and their understanding in order for them to give properly informed consent given how much genetic information could be generated #newborndialogue

17/ Viv turning now to why @GenomicsEngland decided to run a public dialogue on the issue of #newborndialogue screening. Up next is @suzlansdell who is a dialogue and engagement specialist with @sciencewise

18/ Viv thanking @sciencewise and @UKRI for their support of the #newborndialogue dialogue which will be the foundation of their work going forward

17/ Suzannah is explaining the value of dialogue - it can really help you understand the values and perspectives of a wider sample of the British public, to get into the nuances of what people thing and why #newborndialogue

18/ critically it gets to the deeper areas of consensus and disagreement rather than a top of mind set of views, partly because they have been given access to information, partly because they've had change to deliberate deeply with their peers #newborndialogue

19/ Viv pressing Suz on whether the people involved in the #newborndialogue are representative of the British public - 130 aren't representative says Suz, but they are reflective of the wider population, and critically are people not normally involved in these debates

20/ Next up is @HopkinsVanMil who is going to go report the findings from the #newborndialogue

the question the 130 participants were asked was

What are the implications for the NHS and society of using whole genome sequencing (WGS) in newborn screening?

21/ I'm not going to tweet you through the full process, you can read that in the #newborndialogue report. But to summarise, this was an in-depth dialogue involving 4 workshops and a webinar

22/ These #newborndialogue workshops involved 130 participants including some specifically drawn from communities who might be specifically affected by the issues raised

23/ Key #newborndialogue findings:

- Participants are, in the main, supportive of WGS

with the following conditions

24/
- conditions looked for must impact early on in childhood
- there are treatments that can prevent, slow or make life better for the patient
- there must be genetic counselling and mental health assistance, to support understanding the condition #newborndialogue

25/
- a comprehensive genetic database should be established so that people from minority backgrounds are not disadvantaged by receiving less accurate diagnoses than rest of population
#newborndialogue

26/

- effect consent mechanism must be developed
#newborndialogue

27/ what are the implications of this?
- needs training and awareness of programme throughout system
- avoid postcode lottery, ensure that there is sufficient funding
- avoid controversy by having an early programme of public engagement, be transparent
#newborndialogue

28/
- do robust risk assessments and explore benefits and risks
- governments change, so need future proof legislation and governance
- avoid discrimination and build this in
#newborndialogue

29/ I missed one finding
- if WGS is used for research, then data must be fully anonymised

#newborndialogue

30/ Here's the summary slide of the findings from #newborndialogue

31/ great quote from a participant at the end, I summarise

"don't mess this up, it's a great opportunity, but roll it out properly"

#newborndialogue

32/ we're now looking at a video of the participant's perspectives. I won't live tweet this, but I will try to find the link and share later, it's great to give an idea of how these things work and who was involved. #newborndialogue

33/ although one quote, paraphrased again "there are huge implications, but it's not about the science, it's about the ethics' #newborndialogue

34/ Viv asked @HopkinsVanMil how participants were chosen. Worked with a recruitment company who'd normally speak to people on the street, so did it through community engagement online, and through networks, sampling was random. Supported people to get online #newborndialogue

35/ Viv now asking Bob Steele chair of the UK National Screening Committee his reaction to the findings of #newborndialogue. He's noting that the pilot screening programme will generate scientific evidence, but this isn't enough - also need to understand public attitudes, values

36/ He was really impressed by the #newborndialogue and the in-depth engagement by participants, and their level of understanding of the issues.

37/ He noted that the high level support depends on strong consent processes, care about who has access to data, and concern must be given to inequality of access. #newborndialogue

38/ Next steps for the screening committee will be to look at the evidence emerging from the pilot as they start to develop recommendations, at that point will build in #newborndialogue findings

39/ Next up Richard Scott clinical director at Genomics England asked by Viv what surprises there were in the #newborndialogue. He notes how quickly the participants got around into the detailed issues

40/ Viv noting that you don't need to understand the science to discuss the issues in depth and in ways that are supportive for effective decision-making #newborndialogue

41/ Richard says the #newborndialogue will help design the programme of work that will emerge, particularly the need participants identified for support through the whole journey of a newborn which is being screened

42/ going to engage with staff and public in an ongoing way #newborndialogue

43/ Now hearing from Fiona Greer, one of the participants, she was one of the members of the new and expectant parents group. She found the process of participating fascinating. She didn't know much about DNA etc #newborndialogue

44/ She didn't know much about even the heel prick that her newborn had been given. She's learnt so much she says. #newborndialogue

45/ Key messages she pulls out
- hopes pilot project fair and represents whole UK
- WGS must be for treatable conditions
- support must be there for parents and children if diagnosed through WGS, so more genetic counsellors
- and worry about data protection #newborndialogue

46/ Now we're hearing from Rebecca Middleton vice chair of the Genomics England Participant Panel who was part of the Project Oversight Group for the #newborndialogue. Their role were to guide the process, help range of voices were brought into the dialogue

47/ These Oversight Groups are critical for @sciencewise projects, they help ensure that public dialogues cover the critical issues, that the information participants hear is fair and balanced, and that the outputs will influence policy #newborndialogue

48/ Rebecca noting that these dialogues are important to answer the question of what society 'should' do rather than what the science 'can' do, because WGS will affect people through their whole lives #newborndialogue

49/ Rebecca noting that the #newborndialogue must be the start of the conversation with the public about WGS and not the end

50/ We're now getting into questions from people who got into the Zoom webinar. I'll tweet sparingly from now on! #newborndialogue

50 tweets in an hour seems like enough....

51/ Viv notes there are lots of questions on cost. Anne Mackie - cost of WGS test is coming down, the expense will be in supporting families and the treatment, and these will need to be considered by the Screening Committee #newborndialogue

52/ Viv saying that WGS cost is £1000 and falling, but wider costs are those that are more important #newborndialogue

53/ Picking up on findings, there was strong appetite within #newborndialogue both for diagnosis, but also for research into personalised medicine if there is strong data security

54/ a question asked was what trade-offs participants discussed. @hopkinsvanmil notes that they did, including cost. Lots in the #newborndialogue report

55/ Panel now discussing the need for ongoing dialogue and conversation with the public, #newborndialogue is not the end of it, will be dependent on government funding

56/ want to pickup on language here. #newborndialogue being described by @SirMCaulfield as a consultation. Consultation is an important tool in govt's armoury, but it is very different to public dialogue.....

57/ Consultation happens once you've settled on your policy and have a narrow set of questions you want to ask the public, normally questions which will affect the policy at the margins. Normally requires significant expertise to engage #newborndialogue

58/ public dialogue takes a group of the public reflective of the wider public who have the chance to learn about the issues, ask questions of experts and then engage deeply with their peers and the experts about the issues #newborndialogue

59/ public dialogue will help you understand what the participants want the policy to do, why they want this, what values, principles and perspectives that they bring to bear as they think about this, and how the trade these values off against each other #newborndialogue

60/ consultation helps you make sure that you've not missed something important before a policy is rolled out. Public dialogue helps at a much earlier stage of policy development, helping inform the direction and scope of the policy #newborndialogue

61/ I've just realised that I've been tweeting under #newborndialogue and not #NewBornDialogue which is much more helpful for people using screen readers. Apologies. I also didn't have time to caption the image I put up, apologies for that too

62/ Great job by the teams at @GenomicsEngland, @HopkinsVanMil and @sciencewise for pulling this webinar together, gave a real sense of the #NewBornDialogue and the issues lying behind WGS from a public perspective, a model for #OpenGov

63/ the coda... if you missed the #NewBornDialogue launch this morning and what to see what I missed in this thread then the recording is now up

64/ You'll also find all of the video presentations to participants taking part in the #NewBornDialogue here youtube.com/c/GenomicsEngl… and all the materials presented are in the annex to the dialogue report