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In August, the Global Alliance for Genomics and Health called for comment on their draft constitution. As a founding member of the Global Alliance, the Human Variome Project issued the following response.

Dear Professor Altshuler,

Human Variome Project International Limited (HVPI) welcomes the development of a draft Global Alliance for Genomics and Health (GA4GH) constitution for comment by participating organisations. Constitutions are important documents that lay the foundation for almost every part of an organisation’s existence and it bodes well that GA4GH has taken the laudable step of engaging in genuine consultation with its member organisations on this document. To further promote dialogue and discussion, we might suggest that the feedback that is received on this document be placed on a section of the GA4GH website, either publicly accessible or restricted to GA4GH member organisations.

We believe that the document, as it currently stands, is a good first step towards defining a constitution for the GA4GH. We are pleased to see that important concepts and principles such as collaboration, ethics, responsible data sharing, transparency and openness feature heavily in the document. We look forward to participating in the process of articulating the detail necessary to implement these concepts.

We recognise that there are areas that will require further consideration over time, some of which we will refer to in this response.

A minor point is that the Constitution is noted as having been adopted on 19 August 2014. We are assuming that this is a clerical error and member organisations are not being asked to comment on a document that is already approved and in effect?

It would be valuable for a clear statement to be made at the top of the document specifying the legal status of the organisation. The document refers later to the GA4GH being an “unincorporated Association.” Is the organisation registered as such as a legal entity in a specific jurisdiction, to give it legal status to contract, hold funds and do all other things necessary? Further, we believe that the constitution would benefit from a more explicit definition of the governance structure of the GA4GH, specifically the relationships between the various organisational committees, committee procedures, terms of reference for the Steering Committee and Working groups, and procedures for decision making.

Membership

We note the document clearly differentiates between two different classes of members: Organisational and Individual. The GA4GH may wish to consider including more information on how the participation of Organisational and Individual members will be balanced and how this participation will be solicited and effected. This will become quite important if the suggestions that we make below in the section on the Steering Committee are adopted.

Steering Committee

The Steering Committee is presented as the governing body of the organisation. The organisation membership is large and diverse, and we are certain will grow. Like any corporate or not for profit, the law in most countries requires the majority of governing body members to be elected representatives of the members.  We believe this principle should apply to such a prominent body as GA4GH, in the following ways:

  • Steering committee membership, post transition—we see the practical need for the SC to have ability to appoint a portion of the Steering Committee but, for transparency and accountability having the majority elected by the membership, with member numbers always representing a majority on the Steering Committee at any time.
  • Likewise, the principle should apply to approval of the Constitution and any amendments—to be by majority vote of the members.
  • Three year terms, with staggered rotation is a good model.

Conflicts of interest

It will be important to develop a specific policy, with the Steering Committee, or members of particular committees signing up to the policy. We specifically note here that potential conflicts may be of varying types, and not just of a commercial nature. Most organisations now have a declaration of interests/conflicts section at the start of each meeting, to allow any member to declare anything related to the current meeting. For probity, we suggest that this be included in Steering Committee meeting and subcommittee agendas.

Yours faithfully,

Chris Arnold
Chairman
Human Variome Project International Limited 

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Guest Wednesday, 27 September 2023