Minutes
DACReS Working Meeting
1 March 2021 at 5pm ET
Agenda: https://docs.google.com/document/d/1wCZL4vnuftJN5aXWQtvdACmhqkx68RZVoV19j_Hdq4I/edit
Recording:
Passcode: Pdb2.x!2
Attendees (35 attending)
Edward Dove
Vasiliki Rahimzadeh
Jonathan Lawson
Kristina Kekesi-Lafrance
Michael Beauvais
Valentina Di Francesco
Pooja Chitre
Sarah Casauria
Alef Janguas
Ann Novakowski
Daniela Bodemer
Danya Vears
Diana Iglesias
Elena Ghanaim
Emily Lang
Esmeralda Casas
Laurent Fromont
Jordi Rambla
Lindsay Smith
Marie-Jo Brion
Meg Doerr
Minna Paltiel
Nebiyou Petros
Palmira Granados Moreno
Peter Goodhand
Pilar Nicolás
Sean Davidson
Sharmini Alagaratnam
Shuba [no last name listed]
Sue Hui Chen
Stephanie Dyke
Thomas Schaffter
Tiffany Boughtwood
Minutes
- VR: Ted, Jonathan and Vasiliki (Vaso) have been busy responding to NIH grant, “NIH Administrative Supplement for Research and Capacity Building Efforts related to Bioethical Issues” to be submitted this week with the Broad; focusing on procedural standards and …. Response expected in July
- TD: grant would allow further work over a longer period time and across jurisdictions; summarizing where group left off - guiding principles to feed into deliberative process
- Context section
- TD: preambular section that grounds the policy development; DAC policies are both overly restrictive and too lax and consequently is detrimental to genomic data sharing - either by making things unduly difficult or presenting risks to participants, respectively. Risks of inconsistencies.
- Prioritizing aspects of DACs - “essential” and “desired” standards
- Guiding principles
- TD: highlight those principles that are important - four identified
- MP: What does “reasonable expectations” refer to? Privacy? If not, why?
- TD: it goes beyond privacy because expectations may be that data are shared
- Shuba: Are guiding principles just speaking to individual participants? What about group and community interests?
- TD: We should also be thinking of group harms, yes. Community respect.
- JL: Concerns for community may affect other principles
- VR: perhaps expressly add communities
- AN: advancing research may also be leveraged to restrict access and to impugn research questions- was this discussed?
- TD: Not expressly; but DACs will likely look at some aspect of the research proposal, with the caveat that this is debatable; but we can likely agree that a poorly designed question should be rejected
- AN: Impugning the scientific research question may invalidate other concerns and/or goals
- TD: Perhaps we include mention of sharing data for the first principle
- JL: This concern is perhaps handled best by procedural fairness; these concerns will need to be hashed out
- VR: Role of DACs as a secondary check to IRBs -
- MB: How are we defining reasonable expectations? Are they merely procedural? Or substantive?
- TD: Should be answered in the procedural section
- Shuba: Defining reasonable?
- TD: Lawyers more likely to feel comfortable
- Procedural standards
- TD: See the clause in parenthesis in (iii) , which is meant to be a compromise position; trying to distinguish between DACs and RECs in the purpose section, which is a product of discussions back in September; sections 4 and beyond will be heavily influenced by essential vs desired dichotomy
- MD: Purpose section seems to be inclusive of community-led DACs - a good sign
- AN: Further down we also see support for this kind of participant-led DAC
- TD: If you want to help out in any of the sections either already drafted or the ones that are starting from scratch, get in touch with Ted, Vaso or Jonathan (rews-coordinator@ga4gh.org)
- VR: Work is proceeding irrespective of NIH funding; diversity in the working group is very important given the novel nature of DACs
Chat room
17:19:42 From Shubha To Everyone : Hi is anyone else having audio break up issues?
17:19:55 From Meg Doerr To Everyone : No, Shubha
17:20:14 From Shubha To Everyone : Hmm, thanks Meg.
17:20:19 From Shu (Sue) Hui Chen (NHLBI) To Everyone : @Shubha, yes, but i have been having zoom issues all day
17:20:37 From Shu (Sue) Hui Chen (NHLBI) To Everyone : you might want to try calling in via phone. that helped me some
17:20:51 From Shubha To Everyone : Great idea. Thanks Sue
17:22:53 From Vasiliki N. Rahimzadeh To Everyone : Please find google doc of the policy document linked here
17:22:55 From Vasiliki N. Rahimzadeh To Everyone : https://drive.google.com/file/d/1GXOai3VyryUDaoqPTzCfH_WEtZ8P4Cjw/view?usp=sharing
17:32:00 From Susheel Varma, HDR UK To Everyone : Sorry I’m a late joiner. Is this doc shareable for reading offline?
17:33:24 From Vasiliki N. Rahimzadeh To Everyone : Yes, the document is accessible with the link above and downloaded, as well as is currently being shared
17:34:14 From stephanie dyke To Everyone : agree would add participants and their communities
17:34:43 From Susheel Varma, HDR UK To Everyone : Shouldn’t the guiding principles be aligned to the GA4GH framework for responsible sharing of genomic and health-related data - https://www.ga4gh.org/genomic-data-toolkit/regulatory-ethics-toolkit/framework-for-responsible-sharing-of-genomic-and-health-related-data/
17:35:02 From Susheel Varma, HDR UK To Everyone : Thanks Vasiliki
17:44:57 From Shubha To Everyone : Adding to this current discussion, is there a definition of "reasonable" also included?
17:47:17 From Michael Beauvais To Everyone : See Timothy Endicott - Vagueness in Law ;)
17:50:15 From Michael Beauvais To Everyone : Yes! Thank you
17:58:50 From Shubha To Everyone : Happy to help in any way with this draft, noting that All of Us does have a different approach aka no DAC for approving each request.
17:58:57 From Esmeralda Casas To Everyone : Can you share your email for those who’d like to add to the document?
17:59:11 From Kristina Kekesi-Lafrance To Everyone : rews-coordinator@ga4gh.org
17:59:29 From Esmeralda Casas To Everyone : Thanks!