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

Invitation: Webinar: The Role of Awareness in DNA Data Sharing and Pu... @ Wed Mar 30, 2022 10am - 11am (BST) (ydys@wgc.org.uk) [EXT] [Possible Spoof]

by lf8＠sanger.ac.uk

You have been invited to the following event. Title: Webinar: The Role of Awareness in DNA Data Sharing and Public Opinion in India — Challenges Observed 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_97904… Passcode: E&Sseminar Description: The foundation of the study ‘Your DNA, Your Say’ rests on the willingness of individuals around the world to share data about themselves which is then made available to clinicians and researchers and society at large for health care. Trust is an important factor in sharing DNA information. However, during analysis of Indian data, it was evident that people’s awareness about DNA has to be assessed before we can establish their willingness to donate. In this seminar Dr. Qurratulain (Annie) Hasan, Sr. Consultant & HOD, Research Director at the Department of Genetics and Molecular Medicine, Kamineni Hospitals, Hyderabad, India along with Swayamsiddha Sahoo, Research Trainee under Dr. Hasan, who has completed her MA in Public Policy and Governance from Tata Institute of Social Sciences, Hyderabad, India; will discuss their methodology and findings. They will also elaborate on how variables like gender, age and level of education are factors that are decisive regarding awareness to DNA and how their awareness plays an important role in building trust to donate their DNA data. They will also try address the staggering questions pertaining to Big Data, DNA and Public Policy. Or One tap mobile: +13017158592,,97904602319#,,,,*7591691784# US (Washington DC) +13126266799,,97904602319#,,,,*7591691784# 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 +1 346 248 7799 or +1 646 558 8656 or +1 669 900 9128 or +1 253 215 8782 Webinar ID: 979 0460 2319 Passcode: 7591691784 International numbers available: https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_u_abz8P… 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: 979 0460 2319 Passcode: 7591691784 SIP: 97904602319(a)zoomcrc.com Passcode: 7591691784 When: Wed Mar 30, 2022 10am – 11am United Kingdom Time Where: https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_s_97904… Calendar: ydys(a)wgc.org.uk Who: * lf8(a)sanger.ac.uk - organizer * engagesociety(a)wellcomeconnectingscience.org * 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…

2 years

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Latest YDYS Meta-analysis paper published

by Richard Milne

Dear all I hope you're well. The latest meta-analysis paper from YDYS has just been published in Genetics in Medicine here https://www.sciencedirect.com/science/article/pii/S1098360022000028 . Please do share it with anyone you feel would be interested, and thanks again to everyone involved! Best wishes Richard Dr Richard Milne Senior Social Scientist, Engagement and Society, Wellcome Connecting Science Deputy Director, Kavli Centre for Ethics, Science, and the Public, University of Cambridge [ORCID iD icon] orcid.org/0000-0002-8770-2384<https://orcid.org/0000-0002-8770-2384> Engagement and Society +44 (0)1223 496 836 Wellcome Connecting Science | Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA wellcomeconnectingscience.org/societyandethicsresearch [cid:image002.jpg@01D81911.69BA8700] Follow WGCethics on Twitter<https://twitter.com/Genomethics> | Facebook<https://www.facebook.com/Genomethics/> | blog<https://genomethicsblog.org/> Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society.

2 years, 2 months

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Save the date - 30 March @ 10:00 UK time - YDYS India Webinar

by Lauren Robarts

Hello, I’m writing with a save the date for our next YDYS Webinar, which will be on data from the India cohort, presented by Annie Hasan. This will be on Wednesday 30 March at 10:00 UK time. More details to follow in due course! 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 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 years, 2 months

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Webinar video available - The case of Costa Rica (and Latin America): high acceptance of genetic research and data sharing, but low representation

by Lauren Robarts

Hello, Many thanks to those who joined our webinar on Wednesday 12 January, The case of Costa Rica (and Latin America): high acceptance of genetic research and data sharing, but low representation given by Gabriela Chavarría-Soley and Henriette Raventós. In case you hoped to catch it but were unable, the video and slides are now available online here: bit.ly/ESseminarYDYSCostaRica<http://bit.ly/ESseminarYDYSCostaRica> Have a lovely weekend, 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 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 years, 3 months

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Webinar Reminder - Today at 14:00 GMT - Gabriela Chavarría-Soley & Henriette Raventós present on YDYS Costa Rica

by Lauren Robarts

Hello, I’m writing with a reminder of our YDYS webinar, taking place today at 14:00 GMT and delivered by Gabriela Chavarría-Soley and Henriette Raventós: The case of Costa Rica (and Latin America): high acceptance of genetic research and data sharing, but low representation How do Costa Ricans view genomic data sharing? How willing are they to share data, and who do they trust? Click here for the Zoom webinar link: bit.ly/ESseminarYDYSCostaRica<http://bit.ly/ESseminarYDYSCostaRica>. 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://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 years, 3 months

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Invitation: The case of Costa Rica (and Latin America): high acceptan... @ Wed Jan 12, 2022 2pm - 3pm (GMT) (ydys@wgc.org.uk) [EXT] [Possible Spoof]

by lf8＠sanger.ac.uk

You have been invited to the following event. Title: The case of Costa Rica (and Latin America): high acceptance of genetic research and data sharing, but low representation https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_j_93844… Passcode: E&Sseminar Or One tap mobile : US: +13126266799,,93844792012#,,,,*319806# or +13462487799,,93844792012#,,,,*319806# Or Telephone: Dia l(for higher quality, dial a number based on your current location): US: +1 312 626 6799 or +1 346 248 7799 or +1 646 558 8656 or +1 669 900 9128 or +1 253 215 8782 or +1 301 715 8592 Webinar ID: 938 4479 2012 Passcode: 319806 International numbers available: https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_u_adKez… How do Costa Ricans view genomic data sharing? How willing are they to share data, and who do they trust? The Your DNA, Your Say global survey explores the attitudes of individuals regarding genomic data sharing for research, which allows comparisons on how these views vary between regions of the world and countries. Gabriela Chavarría-Soley and Henriette Raventós are researchers at the University of Costa Rica. Their work has focused on identifying genetic risk variants for severe mental disorders in Costa Rica. In this seminar, they will describe their two-decade experience with participants in genetic studies in light of the Your DNA, Your Say results for the country. They will focus on how the willingness to share genomic data depends on the later use of the data, and on who the most trusted persons with this information are. Preliminary patterns seen in Latin American countries as a group will also be discussed. Additionally, they will present recent qualitative results regarding beliefs and practices in the area of genetics of mental disorders in a group of social actors in Costa Rica. The implication of these findings for the historical underrepresentation of Latin populations in genomic studies will be discussed. More info: https://urldefense.proofpoint.com/v2/url?u=https-3A__bit.ly_ESseminarYDYSCo… When: Wed Jan 12, 2022 2pm – 3pm United Kingdom Time Where: https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_j_93844… 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…

2 years, 3 months

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Happy 2022! Reminder of YDYS Costa Rica seminar - 12 January @ 14:00 GMT

by Lauren Robarts

Hello, Happy New Year! I hope you all had a nice and restful break. I’m writing with a reminder of our next YDYS webinar: Wednesday 12 January 2022 at 14:00 GMT The case of Costa Rica (and Latin America): high acceptance of genetic research and data sharing, but low representation by Gabriela Chavarría-Soley and Henriette Raventós Further information including the Zoom link can be found here: bit.ly/ESseminarYDYSCostaRic<http://bit.ly/ESseminarYDYSCostaRica>a<http://bit.ly/ESseminarYDYSCostaRica> I’ll also send the calendar invite to the YDYS email address so if you’d like to attend you will be able to find the Zoom link there as well. Attached is a banner image that can be used to promote the event on social media, feel free to share to alert any other potentially interested parties! 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:E0682E04-587E-4424-BAAB-9A3CBD98F472@Home]

2 years, 3 months

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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 years, 5 months

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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]

2 years, 5 months

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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…

2 years, 5 months

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Your DNA, Your Say collaborators