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GeCIP Eligibility

Most academic researchers and clinical staff from across the world will be eligible to join GeCIP. Specifically, membership of GeCIP is open to any individual, student or member of staff, who is affiliated with:

  • UK academic research institutions (e.g. universities, research institutions etc.)
  • NHS trusts or authorities
  • UK and foreign charitable organisations directly related to the focus of the 100,000 Genomes Project
  • Foreign universities and research institutions that carry out significant research activity
  • UK and foreign governmental departments that carry out significant research activity (eg. MRC, NIH, PHE)
  • Foreign healthcare organisations (private or public) that undertake significant research activity

 

Membership is not open to those who are employed by:

  • Private UK healthcare institutions;
  • Commercial companies;
  • Self-employed.

Individuals from the above excluded institutions may be eligible to apply if they are able to show that their employer supports a significant amount of independent research within their role, perhaps via an honorary contract with an eligible institution. There may be other circumstances where an exception is appropriate and petitions for such an exception will be assessed  by Genomics England on a case-by-case basis.

GMC Members of Staff

Members of staff from NHS Genomics Medicine Centres that have assisted with participant recruitment to the 100,000 Genomes Project are entitled to GeCIP membership but are still required to complete the GeCIP membership application form so that they can be added to the membership of their chosen domain.

Patient and Participant Involvement Representatives

The above restrictions on GeCIP elgibility may initially appear to exclude some Patient and Participant Involvement (PPI) representatives from joining GeCIP. However, provided the individual concerned is not seeking to access the data directly within the Research Environment, then they may request to opt-out of data access and remain a member of GeCIP.

How to Join GeCIP and Other GeCIP Domains

There are details of how to apply to join GeCIP on the Genomics England website. In short after filling in the online form, the applicant's details will be sent to the domain leads of the domains listed in the application. They will consider the applicant's skills and compatibility with the domain's research interests, and decide whether to accept or reject the application. GeCIP has been founded with a 'Team-Science' mindset, and the domain leads are encouraged to bear this in mind. The applicant will be notified of the domain's decision by email.

If you would like to join another domain or subdomain please contact the domain(s) or subdomain(s) lead(s) listed on our Key Contacts page to discuss your interest and how you may effectively contribute to the domain. Note that membership of domains does not govern members’ access to data – all GeCIP members can see all deidentified 100,000 Genomes Project data within the research environment. GeCIP members should only consider joining a new domain(s) if their intended research activities fit within its scope.

 

GeCIP Expectations

As a member of a GeCIP domain you will be given access to the 100,000 Genomes Project dataset. However, there are expectations of members of the GeCIP research community that go beyond data access and analysis. These include:

  • Contribution to the knowledge base for genome interpretation (for example via PanelApp)
  • Active and effective collaboration within your GeCIP domain and with other GeCIP domains
  • Expert assistance in genome interpretation to improve diagnostic yield for NHS Genomic Medicine Centres (GMCs)
  • Contribution to training within your domain where needed
  • Contribution to the ongoing management and administration of the GeCIP domain where requested
  • Other activities in line with the provisions of the GeCIP Rules

GeCIP researchers should note that their proposed research plans may overlap with the research plans of others both within their domain, and potentially with other domains. Where such overlap exists, we encourage collaboration over competition. new domain members to collaborate with those already undertaking the analysis.

 Domain and Institutional Approval 

Once a member of a GeCIP, there are a number of steps through which the domain and researcher must pass before being granted data access

Domain Access Review Committee approval

Prior to being considered for data access, each GeCIP domain must submit a detailed research plan to the Access Review Committee (ARC) who will consider whether the research plans of the domain are in line with the stated acceptable uses of the Genomics England dataset. The acceptable uses are outlined in Research Ethics Committee (REC) approved 100,000 Genomes Project Protocol and the Data Access and Acceptable Uses Policy. The ARC will decide to approve, decline, or amend requests for access to data. External expertise may be called upon to assist the decision-making process, where appropriate.

Participation Agreement 

Each institution that is represented within GeCIP is required to sign a contract, the Participation Agreement with Genomics England. The provisions of the agreement are manifold, but collectively it outlines the various obligations of both the institution and Genomics England with regard to the data access granted to that institution's researchers. It also deals with the ownership of Intellectual Property (IP) resulting from research on the 100,000 Genomes Project, citing the project's IP Policy . To promote a fair, open and co-operative environment, all GeCIP members are expected to work within the agreed terms of the Participation Agreement signed by their host institution, and abide by the terms outlined in the GeCIP Rules. Detailed information on these and other documentation related to GeCIP guidance and policies can be found on the Important Documents and Resources page.

Account Issue

When it comes time to give you access to the data, a Genomics England account will be issued to you using the institutional email address which we hold for you. Included within this email will be your username and instructions on how to access your password using a secure and encrypted service called ???. Your Research Environment username and password are part of a Single Sign-On system and will be used to gain access to a number of other systems within the Embassy. Prior to gaining access there are a number of steps to be undertaken:

  1. You will need to complete an Information Governance course.
  2. You will need to sign the GeCIP Rules agreement.
  3. You will need to inform the Genomics England Service Desk of the successfull completion of Information Governance

Information Governance training

To protect patient confidentiality and ensure that all researchers understand the sensitivity of the data and how to maintain its security, we ask that all individuals requesting access to the Genomics England Research Environment undertake a course on Information Governance.

You must first access the Genomics England Moodle training environment. There will be a training course entitled 'Information Governance and GeCIP Rules'.will be reviewed and granted only for specific, approved purposes in accordance with informed consent and the ethical scope of the Protocol, and any attempted use of the dataset beyond the specified purpose may lead to exclusion. To ensure that all GeCIP members understand the importance of, and can successfully work within, the principals of our IG policies, GeCIP members’ are all required to complete our simple online IG short course before they are given access to the Research Environment.

Embassy Access

Research Embassy access structure and account requirements 

A verified list of GeCIP members and their e-mail addresses attached to each signed insitutional Participation Agreement is returned to Genomics England via [email protected]. The complete list of users and access requirements is then processed by the Genomics England Service Desk (SD). SD issues Embassy log in details (username/password) via your registered institutional e-mail. These log in detail will allow you to complete the Information Governance (IG) training and agree to the GeCIP rules (via electronic tick-box). All users must notify SD of completing this step via email to [email protected]. SD will then grants you access to the Reseach Environment. Here you can login and access all tools and applications within the Reseach Embassy (e.g. LabKey and the Genomics England collaboration platform).

On entering the Reseach Embassy, open LabKey and sign in using the provided login details (not email address). At this point no data will be visible, you will need to alert SD that you have successfully logged into LabKey. SD will then grant you permisson to view all 100,000 Genomes Project data in LabKey.

To-Do's

  • Link to Participation Agreement when updated
  • Link to IP Policy when updated
  • Get details of the encrypted password thing.
  • add in changing password - is this possible?

 

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