- Your DNA, Your Say collaborators - public-lists.sanger.ac.uk

Video of seminar now available: ‘Your DNA, Your Say’ - a global public attitudes study on genomic data sharing

by Lauren Robarts

Hello, Many thanks to those of you who attended the first in our YDYS seminar series yesterday, especially as it involved logging into Zoom at quite unsociable hours for some of you! For those who were interested in attending but unable to, the full talk including Q&A is now available to watch on our website (also for those of you who enjoyed it so much, you’d like to watch it again!) You can access the recording here: bit.ly/SERseminarYDYS<http://bit.ly/SERseminarYDYS> This is a quick reminder, as well, that the next one will be delivered by Richard Milne on 21 July at 16:00 BST. More details to follow in due course. Seminar synopsis: How do people feel about their genomic data being incorporated into Big Data? This project aims to find out. The 'Your DNA, Your Say' project is a global online survey gathering public attitudes towards genomic data sharing. The survey contains 9 innovative films that explain what genomic data sharing is through the eyes of a little boy called Charlie. The findings will offer a public voice to policy created by the Global Alliance for Genomics and Health. Join Professor Anna Middleton as she provides an overview of how this global study was designed and how it evolved. This presentation is the first of a series which gives a voice to the international collaborators and the public audiences around the world who gave their views on genomics. Warm regards, Lauren Robarts Senior Manager Society and Ethics Research Tel: +44 (0)1223 495332 Wellcome Connecting Science| Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK wellcomeconnectingscience.org/societyandethics <http://www.wellcomeconnectingscience.org/societyandethics> [cid:DDAFE692-2E61-449D-B8AF-09CF54DBBEDC@Home] Follow WGCethics on Twitter<https://twitter.com/WGCethics> | blog<https://genomethicsblog.org/> Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society.

3 weeks, 2 days

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Details for first YDYS Seminar, 26 May at 12:00 BST

by Lauren Robarts

Hello again, I am writing with further details for the first YDYS seminar, which will be given by Anna on Wednesday 26 March at 12:00 BST. The details for the seminar (including the Zoom link to use at the time) can be found here: bit.ly/SERseminarYDYS<http://bit.ly/SERseminarYDYS> Anyone is welcome so feel free to mention it to colleagues who may be interested. Attached is a banner that can be used to promote the talk, in case you’d like to share it on your social media channels. Tweets will also be going out from our team account, https://twitter.com/WGCethics?ref_src=twsrc%5Etfw<https://twitter.com/WGCethics?ref_src=twsrc^tfw>, in case you’d prefer to re-tweet. Warm regards, Lauren Robarts Senior Manager Society and Ethics Research Tel: +44 (0)1223 495332 Wellcome Connecting Science| Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK wellcomeconnectingscience.org/societyandethics <http://www.wellcomeconnectingscience.org/societyandethics> [cid:DDAFE692-2E61-449D-B8AF-09CF54DBBEDC@Home] Follow WGCethics on Twitter<https://twitter.com/WGCethics> | blog<https://genomethicsblog.org/> Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society. [cid:90059C36-7FD9-42FA-A6F1-B908B54A91AB@home]

3 weeks, 3 days

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Latest YDYS paper published!

by Richard Milne

Dear all Just an update to say that the paper that many of you commented on towards the end of last year has now been published in Genome Medicine. Thanks so much for your comments and contributions, and please do share with your networks. I hope to be in touch in the next few weeks with the draft of the latest meta-analysis. https://genomemedicine.biomedcentral.com/articles/10.1186/s13073-021-00903-0 [genomemedicine.biomedcentral.com]<https://urldefense.proofpoint.com/v2/url?u=https-3A__genomemedicine.biomedc…> Best wishes Richard

3 weeks, 3 days

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Upcoming dates in the YDYS Seminar Series

by Lauren Robarts

Hello, Many thanks to those of you who have expressed interest in delivering a seminar as a part of our YDYS Seminar Series. I’ll be in touch to follow up with those who said they would like to present to discuss scheduling over the coming months. In the meantime I wanted to alert you to the dates and times of the first three sessions so that you can mark your calendars. Coming up in a couple of weeks: Wednesday 26 May at 12:00 UK time ‘Your DNA, Your Say’ - a global public attitudes study on genomic data sharing Anna Middleton will provide an overview of how this global study was designed and how it evolved. This presentation is the first of a series which gives a voice to our international collaborators and the public audiences around the world who gave their views on genomics. Further down the line: Wednesday 21 July at 16:00 UK time - Richard Milne will be presenting Tuesday 5 October at 10:00 UK time - Yali Cong will be presenting I’ll send another email before too long with further information for Anna’s talk, including the Zoom link. Warm regards, Lauren Robarts Senior Manager Society and Ethics Research Wellcome Connecting Science| Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK wellcomeconnectingscience.org/societyandethics <http://www.wellcomeconnectingscience.org/societyandethics> [cid:DDAFE692-2E61-449D-B8AF-09CF54DBBEDC@Home] Follow WGCethics on Twitter<https://twitter.com/WGCethics> | blog<https://genomethicsblog.org/> Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society.

1 month, 1 week

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Recurring webinar series on Your DNA, Your Say, from spring 2021

by Lauren Robarts

Hello, I hope you are all well. As a team we periodically host seminars and webinars with a mixture of our own team presenting as well as guest speakers. From Spring 2021 We would like to put on a recurring series of webinars focusing on Your DNA, Your Say and its findings. Anna and Richard would present for the first couple of instalments but then it would be lovely for us to host you, our collaborators, as guest speakers to present your findings to date, your experience with the translation process, etc. Let me know if this is something that you would be interested in participating in, and we can start to etch out a schedule. Warm regards, Lauren Robarts Senior Manager Wellcome Genome Campus Society and Ethics Research | Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK wgc.org.uk/ethics<http://wgc.org.uk/ethics> Follow WGCethics on Twitter<https://twitter.com/WGCethics> | YouTube<https://www.youtube.com/channel/UCASglZ45HDb5b7r8aNJP56w> | blog<https://genomethicsblog.org> [cid:image001.png@01D6BE59.FDCDFB70] Wellcome Genome Campus Society and Ethics Research is part of Connecting Science, which enables everyone to explore genomic science and its impact on research, health and society.

2 months

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Recurring webinar series on Your DNA, Your Say, from spring 2021

by Lauren Robarts

Hello, I hope you are all well. As a team we periodically host seminars and webinars with a mixture of our own team presenting as well as guest speakers. From spring 2021 We would like to put on a recurring series of webinars focusing on Your DNA, Your Say and its findings. Anna and Richard would present for the first couple of instalments but then it would be lovely for us to host you, our collaborators, as guest speakers to present your findings to date, your experience with the translation process, etc. Let me know if this is something that you would be interested in participating in, and we can start to etch out a schedule. Warm regards, Lauren Robarts Senior Manager Wellcome Genome Campus Society and Ethics Research | Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK wgc.org.uk/ethics<http://wgc.org.uk/ethics> Follow WGCethics on Twitter<https://twitter.com/WGCethics> | YouTube<https://www.youtube.com/channel/UCASglZ45HDb5b7r8aNJP56w> | blog<https://genomethicsblog.org> [cid:image001.png@01D6BE59.FDCDFB70] Wellcome Genome Campus Society and Ethics Research is part of Connecting Science, which enables everyone to explore genomic science and its impact on research, health and society.

3 months, 2 weeks

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Following up from today's 2nd YDYS Collaborator's Virtual Meeting

by Lauren Robarts

Hello, Many thanks to everyone for joining the 2nd YDYS Collaborators Virtual Meeting, especially those dialling-in in the middle of the night! For reference, and for those who were unable to join, the video of the meeting can be seen here: https://vimeo.com/503141644/342e26ea70 The action points all have to do with setting up meetings to progress collaborations, these are outlined below. I have cc-ed in Angela from our team, who can assist with organising these. Angela, can you kindly set up Doodle Polls for the following (I’ve included email addresses and approximate locations to take into account timezones): * Linking up the China, Russia and India arms of the study to discuss the cultural context of genomics and similar public attitudes in these markets * Annie Hasan (qhasan2013(a)gmail.com<mailto:qhasan2013@gmail.com>) Hyderabad, India * Yali Cong (ethics(a)bjmu.edu.cn<mailto:ethics@bjmu.edu.cn>) Beijing, China * Elena Baranova (baranova.gen(a)gmail.com<mailto:baranova.gen@gmail.com>) Moscow, Russia * Vera Izhevskaya (izhevskaya(a)med-gen.ru<mailto:izhevskaya@med-gen.ru>) Moscow, Russia * Anna Middleton (anna.middleton(a)wgc.org.uk<mailto:anna.middleton@wgc.org.uk>) * Richard Milne (richard.milne(a)wgc.org.uk<mailto:richard.milne@wgc.org.uk>) * Meeting to strategise recruitment in Iceland, including exploring panel/market research companies there * Vigdís Stefànsdóttir (viggastefans(a)gmail.com<mailto:viggastefans@gmail.com>) Reykjavík, Iceland * Anna Middleton (anna.middleton(a)wgc.org.uk<mailto:anna.middleton@wgc.org.uk>) * Lauren Robarts (lauren.robarts(a)wgc.org.uk<mailto:lauren.robarts@wgc.org.uk>) * Heidi C Howards (if possible!!) (heidi.howard(a)med.lu.se<mailto:heidi.howard@med.lu.se>) Lund, Sweden * Meeting between the Japanese team and SER to discuss data analysis, in late February or March * Jusaku Minari (minari(a)eth.med.osaka-u.ac.jp<mailto:minari@eth.med.osaka-u.ac.jp>) Osaka, Japan * Megumi Kimura (kimura(a)iir.hit-u.ac.jp<mailto:kimura@iir.hit-u.ac.jp>) Osaka, Japan * Jusaku, please advise if others from your team should be added * Anna Middleton (anna.middleton(a)wgc.org.uk<mailto:anna.middleton@wgc.org.uk>) * Richard Milne (richard.milne(a)wgc.org.uk<mailto:richard.milne@wgc.org.uk>) * There was mention towards the beginning of the meeting of the Costa Rican team and the Portuguese teams linking up. Please let me know if you would like me to do email introductions to facilitate this. Of course, everyone is welcome to send emails to the group address (ydys(a)wgc.org.uk<mailto:ydys@wgc.org.uk>) in order to reach the entire group. The 3rd YDYS Collaborators Meeting, which will be in a few months time, will focus on analysis and how to ‘defend our groupings of countries together’, i.e. if we group together Southern Europe versus Northern Europe, what the rationalisation is for this (thank you, Claudia, for raising this question in today’s meeting) Warm regards, Lauren Robarts Senior Manager Wellcome Genome Campus Society and Ethics Research | Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK wgc.org.uk/ethics<http://wgc.org.uk/ethics> Follow WGCethics on Twitter<https://twitter.com/WGCethics> | YouTube<https://www.youtube.com/channel/UCASglZ45HDb5b7r8aNJP56w> | blog<https://genomethicsblog.org> [cid:image001.png@01D6BE59.FDCDFB70] Wellcome Genome Campus Society and Ethics Research is part of Connecting Science, which enables everyone to explore genomic science and its impact on research, health and society.

4 months, 2 weeks

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YDYS Collaborators Virtual Meeting - Thurs 21 Jan @ 11:30 UK time - Zoom

by Lauren Robarts

Hello, Many thanks for completing the Doodle Poll to schedule the next YDYS collaborator meeting in early 2021. The most popular option was Thursday 21 January at 11:30 UK time and so I have just sent out a calendar invite for this from Anna’s diary. The Zoom details are included there, and are also below. I will send an email closer to the time with an agenda, in the meantime, in case we are not in touch again before then, have a lovely festive period! Topic: YDYS Collaborators Virtual Meeting Time: Jan 21, 2021 11:30 AM London Join Zoom Meeting https://sanger.zoom.us/j/5023046014?pwd=QnRwWTJkZ1FxRXBxOFUzU3B0cW81UT09 Dial by your location +44 330 088 5830 United Kingdom Find your local number: https://sanger.zoom.us/u/aenK5drVNL Meeting ID: 502 304 6014 Passcode: 283450 Warm regards, Lauren Robarts Senior Manager Wellcome Genome Campus Society and Ethics Research | Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK wgc.org.uk/ethics<http://wgc.org.uk/ethics> Follow WGCethics on Twitter<https://twitter.com/WGCethics> | YouTube<https://www.youtube.com/channel/UCASglZ45HDb5b7r8aNJP56w> | blog<https://genomethicsblog.org> [cid:image001.png@01D6BE59.FDCDFB70] Wellcome Genome Campus Society and Ethics Research is part of Connecting Science, which enables everyone to explore genomic science and its impact on research, health and society.

4 months, 4 weeks

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Proposal for a Your DNA, Your Say Collection at Wellcome Open Research

by Richard Milne

Dear all, We're getting in touch to follow up discussions of publishing national or regional data from Your DNA, Your Say, and with a proposal for discussion at our meeting in January. Your DNA, Your Say has the potential to generate a large number of country and regional papers, as well as the meta-analyses papers. Our intention is to continue to direct the meta-analysis papers to international journals. However, we are also focussed on finding publication avenues for the national and regional analyses that are ongoing. To date, analyses of individual countries (e.g. Germany) or small groups of countries (e.g. UK/USA/Canada/Australia) have been published in journals such as the European Journal for Human Genetics. However, single journals are likely to be overwhelmed if multiple papers are targeted to them, while distributing the project's findings across multiple journals would make it more difficult to follow our findings across countries. Providing a central home for publication would mean that a reader could easily access publications across the study countries. We were recently contacted by Wellcome Open Research (WOR) (https://wellcomeopenresearch.org/) about the possibility of hosting our findings there. WOR is an online, open access journal owned by the Wellcome Trust and open to all Wellcome-funded research. This includes YDYS through the Sanger group (Anna et al.). WOR includes topic collections similar to an edited collection. We suggest that such a collection would be a great publication target for papers reporting country findings from Your DNA, Your Say, forming a collection on global public perceptions of sharing genomic and health data. In addition, alongside the YDYS research papers, we can also include invited commentaries and reflections (called Open Letters) on the implications of the findings. This would extend the reach of the project and contribute to the wider impact. We don't need to wait for all papers to be ready before submission - once four or so papers have been published, the collection would be launched. However, we would propose aiming to have all papers in by March 2021 with the aim of launching the collection then. WOR enables rapid publication, because the papers are made available online and peer review occurs post-publication. Peer review is open, and reviews are published alongside the paper. Existing collections can be seen here https://wellcomeopenresearch.org/collections Further details are here https://wellcomeopenresearch.org/for-authors/article-guidelines We're happy to talk about this in more detail at our meeting in January but it would be great to hear your thoughts, specifically: 1. Is this something you're interested in and are you happy to target your YDYS country level analysis to a WOR collection? 2. Do you expect to have your analysis ready to submit by February/March 2021? 3. Are you able to propose 1-2 reviewers for your paper, at least one of whom should be outside your institution and country? We hope you're keeping well, and we're looking forward to speaking soon Richard and Anna Dr Richard Milne Senior Social Scientist, Society and Ethics Research, Wellcome Genome Campus Honorary Senior Visiting Fellow, University of Cambridge Co-Lead, ELSI theme, Cambridge Public Health [ORCID iD icon] orcid.org/0000-0002-8770-2384<https://orcid.org/0000-0002-8770-2384>

6 months, 2 weeks

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Doodle Poll to schedule next YDYS Collaborator Virtual Meeting (January 2021)

by Lauren Robarts

Hello, I hope everyone is well. I am writing to get the ball rolling on planning the next YDYS collaborator virtual meeting for January 2021. Please use the following Doodle Poll (https://doodle.com/poll/e6etb2at3k8uekd5) to indicate your availability. Since the clocks have changed the differences across time zones are unfortunately even more extreme, so there is a real challenge in finding a time in the day that is appropriate for everyone. As with the last Doodle Poll it is thus possible to indicate “if need be”. While it would be great to get as many people as possible on a single Zoom, if needed we can explore the possibility of planning more than one meeting to account for the big differences in time zones. Kindly complete this Doodle poll by Friday 27 November. Warm regards, Lauren Robarts Senior Manager Tel: +44 (0) 01223 495332 Wellcome Genome Campus Society and Ethics Research | Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK wgc.org.uk/ethics<http://wgc.org.uk/ethics> [cid:9452adc824faa7de911d7b4abfa5e405f4dad76e41@Cherwell.com] Wellcome Genome Campus Society and Ethics Research is part of Connecting Science, which enables everyone to explore genomic science and its impact on research, health and society.

7 months

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2021

2020

Your DNA, Your Say collaborators ----- 2021 ----- June 2021 May 2021 April 2021 March 2021 February 2021 January 2021 ----- 2020 ----- December 2020 November 2020 October 2020

Your DNA, Your Say collaborators