GDO/GA4GH GD Subgroup Meeting

Meeting Agenda

Date: 16 May, 2024 at 4 pm (ET)

Meeting Chair: Yann Joly, Prof.

Zoom meeting ID: 832 3462 8613

Zoom link: HERE

Passcode: GA4GH

Zoom Recording: HERE

Passcode: z3s0=P*g

Attendees

1. Yann Joly                        7.  Gemma Brown                        13.  Diya Uberoi
2. Dianne Nicol                                 8.  Margaret Otlowski                        14.  Charles Dupras
3. Meg Doerr                        9.  Priya Ayyappaswamy             15.  Hrefna Gunnarsdóttir
4. Ariel Xue                        10.  Anya Prince                           16.  Anja Bedeker
5. Jessica Seegobin                11.  Ma’n Zawati                            17.  Yvonne Bombard
6. Michal Koscik                           12.  Palmira Granados Moreno

Meeting Minutes:

Welcome & introductions

YJ welcomed everyone and provided the aims of the meeting. The meeting focused on:  1. publishing the GD definition both on the GA4GH and GDO websites. 2.) developing a model Genetic Non-Discrimination Clause and 3.) developing an online country assessment tool that can be queried to provide risks of GD in countries.

Discussion

DU began the discussion by sharing the progress of the two manuscripts.  She explained that the “Delphi study” is being considered by JAMA Open Network, which has requested that the article be cut down to 3500 words. The Definition of GD paper – “A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate” – has now been accepted by Nature Genetics. YJ highlighted that the definition of  GD paper will be made available once a final copy is received by the journal and invited members to share their views on the manuscript. He also welcomed those requesting access to send an email to DU for the pre-proved version of the article. A number of suggestions were made regarding ways to highlight the findings. MO proposed that all graphics from the paper could be put on the website. CD suggested that the results of the Delphi survey could be divided and transformed into two papers. He also offered to share a copy of a Delphi that he had to cut in length. 

The discussion then moved forward with a proposal to take the work of the group further. YJ proposed the idea of developing a model genetic non-discrimination clause based on a human rights framework that could guide policymakers.

He also suggested developing an online tool in the context of law and policy to review and assess the level of genetic discrimination risk in different jurisdictions (low, intermediary, high/lack of laws/guidelines). The metrics would be shared with members of  GA4GH and GDO who could validate the assessment and check the updates of GD-related laws. The tool would use indicators based on the current regulatory approaches in countries, case law, steps countries have taken to address GD, and current awareness amongst people. Given, however, that this would be a long endeavor and take substantial background work, YJ suggested applying for a grant to support the project. AP and MZ agreed as to the importance of such a tool. MD noted that identifying best practices in certain countries to deter GD could also help develop models to prevent GD. AP proposed that we design a GD policy scorecard  to analyze the strength of policies based on the metrics. While YJ noted the importance of such an approach, he highlighted the need to go beyond policy assessments and suggested undertaking a quantitative assessment as well. MO agreed with YJ’s proposition. YJ also recommended having broad categories (eg. policies, evidence of discrimination, information campaigns, adoption of standards, and good practices) to assess current GD standards.

The meeting ended on a high note with everyone agreeing on the importance of the proposed tools.

Key Takeaways:

• Despite state initiatives to address GD, GD persists and governments need to take targeted steps to ensure accountability.
• A model genetic non-discrimination clause based on a human rights or disability law framework could provide additional guidance to policymakers
• An online tool that captures current regulatory approaches, knowledge of GD, and steps countries have taken to address the phenomenon may provide a way to assess the potential risk of GD in countries.

Next Steps:

• A follow-up meeting will be held on May 28th, for all those who were unable to attend
• A copy of the GD definition manuscript will be sent to all co-authors and made widely available upon receipt of the final version from the journal. A copy of the shortened Delphi study can be made available upon request
• The definition of GD will be added to the lexicon and published on the GA4GH and GDO website
• Background work on the model policy clause to begin