November 2021 - Your DNA, Your Say collaborators

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 12 Nov '21

12 Nov '21

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.

1 0

Webinar Reminder - Today at 16:00 GMT - Torsten Voigt and Barbara Prainsack present on YDYS Germany
by Lauren Robarts 10 Nov '21

10 Nov '21

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]

1 0

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 03 Nov '21

03 Nov '21

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…

1 0

Reminder: YDYS Germany seminary next Wed 10 Nov at 16:00 GMT (plus save the date for Jan 2022!)
by Lauren Robarts 03 Nov '21

03 Nov '21

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]

1 0