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

Video of Wed 10 November webinar now available: "For-profit companies don’t care about patients’ well-being” Data and sharing in Germany

by Lauren Robarts

Hello, Many thanks to those who joined our webinar on Wednesday, "For-profit companies don’t care about patients’ well-being” Data and sharing in Germany. Thank you again to Torsten and Barbara for the interesting talk! A full length video of the webinar is now viewable on our website, here: https://bit.ly/ESseminarYDYSGermany A PDF of the presentation slides is also uploaded and will be available at the same link from Monday afternoon. 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 ethicsWCS 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.

2 weeks, 5 days

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Webinar Reminder - Today at 16:00 GMT - Torsten Voigt and Barbara Prainsack present on YDYS Germany

by Lauren Robarts

Hello, I’m writing with a reminder of our YDYS webinar, taking place today at 16:00 GMT and delivered by Torsten Voigt and Barbara Prainsack: “For-profit companies don’t care about patients’ well-being”: Data and sharing in Germany. On average, Germans seem less willing to donate their medical and DNA data than residents of other countries. Why is this? Torsten Voigt and Barbara Prainsack will provide some answers on the basis of the German Your DNA, Your Say survey. Click here for the Zoom webinar link: bit.ly/ESseminarYDYSGermany<http://bit.ly/ESseminarYDYSGermany>. For those unable to attend live, a video of the seminar will also be viewable here within a few days of the event. 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://wellcomeconnectingscience.org/societyandethics> [cid:DDAFE692-2E61-449D-B8AF-09CF54DBBEDC@Home] Follow ethicsWCS on Twitter | blog Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society. [cid:47E0BB02-CF6E-4678-BE55-A0CC5CBA2172]

3 weeks

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Invitation: "For-profit companies don’t care about patients’ well-bei... @ Wed Nov 10, 2021 4pm - 5pm (GMT) (ydys@wgc.org.uk) [EXT] [Possible Spoof]

by lf8＠sanger.ac.uk

You have been invited to the following event. Title: "For-profit companies don’t care about patients’ well-being” Data and sharing in Germany Join from a PC, Mac, iPad, iPhone or Android device: Please click this URL to join. https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_s_95135… Passcode: E&Sseminar Description: On average, Germans seem less willing to donate their medical and DNA data than residents of other countries. Why is this? Torsten Voigt and Barbara Prainsack will provide some answers on the basis of the German Your DNA, Your Say survey. An earlier paper from the YDYS study reported that residents of Germany were less willing to make their data available for research than people in English speaking countries. New data analysis by Torsten H. Voigt and Barbara Prainsack shows that the reasons for this are strongly related to concerns about disproportionate commercial profits, and asymmetries in benefits for corporate actors v. citizens and patients. Findings from the German YDYS data thus underscore the need to think about privacy and autonomy not merely (and perhaps not even primarily) as individual rights and interests but as collective concerns. Rather than asking “What is in it for me”, most people’s concerns regarding data sharing seem to be related to the question of “What kind of society do we want?” Torsten H. Voigt is the Managing Director of the Institute of Sociology and the Chair of the Technology and Diversity Program at RWTH Aachen University. Barbara Prainsack is the Head of Department of Political Science, and the Director of the interdisciplinary Research Platform Governance of Digital Practices, at the University of Vienna. Or One tap mobile: +13017158592,,95135393100#,,,,*9905643994# US (Washington DC) +13126266799,,95135393100#,,,,*9905643994# US (Chicago) Or join by phone: Dial(for higher quality, dial a number based on your current location): US: +1 301 715 8592 or +1 312 626 6799 or +1 646 558 8656 or +1 253 215 8782 or +1 346 248 7799 or +1 669 900 9128 Webinar ID: 951 3539 3100 Passcode: 9905643994 International numbers available: https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_u_acJis… Or an H.323/SIP room system: H.323: 162.255.37.11 (US West) 162.255.36.11 (US East) 213.19.144.110 (Amsterdam Netherlands) 213.244.140.110 (Germany) Webinar ID: 951 3539 3100 Passcode: 9905643994 SIP: 95135393100(a)zoomcrc.com Passcode: 9905643994 When: Wed Nov 10, 2021 4pm – 5pm United Kingdom Time Where: https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_s_95135… Calendar: ydys(a)wgc.org.uk Who: * lf8(a)sanger.ac.uk - organizer * ydys(a)wgc.org.uk Event details: https://urldefense.proofpoint.com/v2/url?u=https-3A__calendar.google.com_ca… Invitation from Google Calendar: https://urldefense.proofpoint.com/v2/url?u=https-3A__calendar.google.com_ca… You are receiving this courtesy email at the account ydys(a)wgc.org.uk because you are an attendee of this event. To stop receiving future updates for this event, decline this event. Alternatively you can sign up for a Google account at https://urldefense.proofpoint.com/v2/url?u=https-3A__calendar.google.com_ca… and control your notification settings for your entire calendar. Forwarding this invitation could allow any recipient to send a response to the organizer and be added to the guest list, or invite others regardless of their own invitation status, or to modify your RSVP. Learn more at https://urldefense.proofpoint.com/v2/url?u=https-3A__support.google.com_cal…

4 weeks

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Reminder: YDYS Germany seminary next Wed 10 Nov at 16:00 GMT (plus save the date for Jan 2022!)

by Lauren Robarts

Hello, I hope you are all well! I’m writing with a reminder for the next in our YDYS Seminar Series, as well as a save the date for the following one, the first of 2022. A quick note to say that our team name has recently changed from Society and Ethics Research to Engagement & Society, so our series names has now been updated to E&S Seminar Series. Wednesday 10 November at 16:00 GMT "For-profit companies don’t care about patients’ well-being” Data and sharing in Germany by Torsten Voight and Barbara Prainsack Further information, including the Zoom link can be found here: bit.ly/ESseminarYDYSGermany<http://bit.ly/ESseminarYDYSGermany> *Feel free to promote this seminar with your circles, a banner image for social media is attached! SAVE THE DATE Wednesday 12 January 2022 at 14:00 GMT Gabriela Chavarria Soley and Hanriette Raventos will present from the Costa Rican arm of the survey. More information to follow! 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 ethicsWCS 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:73A301F9-A61C-49EB-811D-AB52B483F98F@internal.sanger.ac.uk]

4 weeks

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Video & slides now available - Prof Yali Cong - Public Perspectives on Genetic Information: Is there an essential difference between China and the UK?

by Lauren Robarts

Hello, Yali, thank you again so much for your wonderful talk on Tuesday! The video and slides of Yali’s talk (Public Perspectives on Genetic Information: Is there an essential difference between China and the UK?) are now available here: bit.ly/SERseminarYDYSChina<http://bit.ly/SERseminarYDYSChina>. The next one will be delivered by Barbara Prainsack and Torsten Voigt on Wednesday 10 November at 16:00 GMT. More details to follow closer to the time! 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 ethicsWCS 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, 3 weeks

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Starting now! Yali Cong: Public Perspectives on Genetic Information: Is there an essential difference between China and the UK?

by Lauren Robarts

Hello, Please join if you’re able, starting now is Yali’s YDYS Seminar. You can access it here: https://sanger.zoom.us/j/95314452673?pwd=SGNxR1UvUjBOYlZOUGhSUVdmVkxkUT09 Passcode: SERseminar 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 ethicsWCS 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, 4 weeks

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Next YDYS Webinar by Yali Cong - 5 October - 10:00 BST + Save the Date for the next one!

by Lauren Robarts

Hello, I hope you are all well! I’m writing with a reminder for our next YDYS Webinar, being delivered by Yali Cong, as well as a save the date for November instalment, which will be delivered by Barbara Prainsack and Torsten Voigt. Tuesday 5 October 10:00-11:00 BST Prof Yali Cong Public Perspectives on Genetic Information: Is there an essential difference between China and the UK? Data gathered by the Your DNA, Your Say survey, a global study on attitudes towards DNA and Big Data, has revealed significant similarities in the attitudes of people surveyed in China, India and Russia. Prof Yali Cong, our collaborator for the Chinese arm of Your DNA, Your Say, plans to conduct further analysis of this phenomenon in a literature review. In this seminar she will discuss her findings so far and how these attitudes compare to findings from the UK audience. Yali is Professor in Bioethics, Dean of the Department of Medical Ethics and Health Law and was also the Chair of Peking University Institutional Review Board (PKU IRB) from 2010-2020. Prof. Cong got her PhD degree in Philosophy of Science and has a wide range of research interest in Research Ethics, Global Public Health Ethics and Medical Professionalism. She has published a variety of papers in the field of medical ethics. She is the current Chair of the China Medical Ethics Association for the term 2020 to 2022. She has been a collaborator on the Your DNA, Your Say study since 2019. Information on the webinar, including the Zoom link, can be found here: bit.ly/SERseminarYDYSChina<http://bit.ly/SERseminarYDYSChina> All are welcome to join! Attached is a promo image that can be used on Twitter, feel free to share it on your social media along with the above link if you are so inclined. -SAVE THE DATE- Wednesday 10 November 16:00-17:00 GMT Prof Barbara Prainsack and Prof Torsten Voigt More information to come Have a lovely weekend and hope to see you via Zoom on Tuesday! 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 ethicsWCS 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:1F3A772A-5BAE-4A66-AEF2-A07DEDDB64ED@Home]

2 months

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Invitation: SER Seminar Series - Public Perspectives on Genetic Infor... @ Tue 5 Oct 2021 10am - 11am (BST) (ydys@wgc.org.uk) [EXT] [Possible Spoof]

by am33＠sanger.ac.uk

You have been invited to the following event. Title: SER Seminar Series - Public Perspectives on Genetic Information: Is there an essential difference between China and the UK? (Yali Cong) Please click the link below to join the webinar: https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_j_95314… Passcode: SERseminar Or One tap mobile : United Kingdom: +442034815237,,95314452673#,,,,*8283812591# or +442034815240,,95314452673#,,,,*8283812591# Or Telephone: Dial(for higher quality, dial a number based on your current location): United Kingdom: +44 203 481 5237 or +44 203 481 5240 or +44 203 901 7895 or +44 208 080 6591 or +44 208 080 6592 or +44 330 088 5830 or +44 131 460 1196 Webinar ID: 953 1445 2673 Passcode: 8283812591 International numbers available: https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_u_aewJi… Data gathered by the Your DNA, Your Say survey, a global study on attitudes towards DNA and Big Data, has revealed significant similarities in the attitudes of people surveyed in China, India and Russia. Prof Yali Cong, our collaborator for the Chinese arm of Your DNA, Your Say, plans to conduct further analysis of this phenomenon in a literature review. In this seminar she will discuss her findings so far and how these attitudes compare to findings from the UK audience. Yali is Professor in Bioethics, Dean of the Department of Medical Ethics and Health Law and was also the Chair of Peking University Institutional Review Board (PKU IRB) from 2010-2020. Prof. Cong got her PhD degree in Philosophy of Science and has a wide range of research interest in Research Ethics, Global Public Health Ethics and Medical Professionalism. She has published a variety of papers in the field of medical ethics. She is the current Chair of the China Medical Ethics Association for the term 2020 to 2022. She has been a collaborator on the Your DNA, Your Say study since 2019. When: Tue 5 Oct 2021 10am – 11am United Kingdom Time Where: https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_j_95314… Calendar: ydys(a)wgc.org.uk Who: * am33(a)sanger.ac.uk- creator * ydys(a)wgc.org.uk Event details: https://urldefense.proofpoint.com/v2/url?u=https-3A__calendar.google.com_ca… Invitation from Google Calendar: https://urldefense.proofpoint.com/v2/url?u=https-3A__calendar.google.com_ca… You are receiving this courtesy email at the account ydys(a)wgc.org.uk because you are an attendee of this event. To stop receiving future updates for this event, decline this event. Alternatively, you can sign up for a Google Account at https://urldefense.proofpoint.com/v2/url?u=https-3A__calendar.google.com_ca… and control your notification settings for your entire calendar. Forwarding this invitation could allow any recipient to send a response to the organiser and be added to the guest list, invite others regardless of their own invitation status or to modify your RSVP. Learn more at https://urldefense.proofpoint.com/v2/url?u=https-3A__support.google.com_cal…

2 months

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Trust and trustworthiness in Genomic Data Sharing webinar - video and slides now available

by Lauren Robarts

Hello, Many thanks to those who joined our seminar last Wednesday 21 July, Trust and trustworthiness in Genomic Data Sharing, by Richard Milne. The webinar video and PDF of the slides are now available on our website, here: bit.ly/SERseminarTrust<http://bit.ly/SERseminarTrust> Mark your calendars for upcoming seminars!: Tuesday 5 October 2021 at 10:00 UK time - Yali Cong will present on data from the Chinese arm Wednesday 10 November 2021 at 16:00 UK time - Barbara Prainsack & Torsten Voight will present on data from the German arm 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 ethicsWCS 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.

4 months, 1 week

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Invitation: SER Seminar Series - Trust and trustworthiness in genomic... @ Wed Jul 21, 2021 4pm - 5pm (BST) (ydys@wgc.org.uk) [EXT] [Possible Spoof]

by lf8＠sanger.ac.uk

You have been invited to the following event. Title: SER Seminar Series - Trust and trustworthiness in genomic data sharing (Richard Milne) When: Wed Jul 21, 2021 4pm – 5pm United Kingdom Time Where: Save the date for now - more details to come Calendar: ydys(a)wgc.org.uk Who: * lf8(a)sanger.ac.uk - organizer * jerome.atutornu(a)wgc.org.uk * angela.wilson(a)wgc.org.uk * Alessia Costa * jon.roberts(a)wellcomeconnectingscience.org * Chris Patch * anna.middleton(a)wgc.org.uk * Richard Milne * ydys(a)wgc.org.uk Event details: https://urldefense.proofpoint.com/v2/url?u=https-3A__calendar.google.com_ca… Invitation from Google Calendar: https://urldefense.proofpoint.com/v2/url?u=https-3A__calendar.google.com_ca… You are receiving this courtesy email at the account ydys(a)wgc.org.uk because you are an attendee of this event. To stop receiving future updates for this event, decline this event. Alternatively you can sign up for a Google account at https://urldefense.proofpoint.com/v2/url?u=https-3A__calendar.google.com_ca… and control your notification settings for your entire calendar. Forwarding this invitation could allow any recipient to send a response to the organizer and be added to the guest list, or invite others regardless of their own invitation status, or to modify your RSVP. Learn more at https://urldefense.proofpoint.com/v2/url?u=https-3A__support.google.com_cal…

4 months, 3 weeks

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2021

2020

Your DNA, Your Say collaborators ----- 2021 ----- December 2021 November 2021 October 2021 September 2021 August 2021 July 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