This panel concludes an entire day of sessions at the 4th Biennial Meeting of the Human Variome Project Consortium discussing HVP Country Nodes and attempting to better define what they are and what they do in the light of Project Roadmap 2012-2016. It looked specifically at the idea of providing accreditation for HVP Country Nodes and discuss how such an accreditation process would work.
1. A process for ACCREDITATION of HVP COUNTRY NODES
Mona El-Ruby Aida Falcon de Vargas Tilak Shrestha Graham Taylor Thomy de Ravel
Egypt Venezuela Nepal UK Belgium
2. Setting
Behaving Sharing Building
Normative
Ethically Knowledge Capacity
Function
Picture Credits: Michael Mandiberg via Flickr, Henrik Moltke, Tim Smith and Chris Arnold
3.
4.
5.
6. Accreditation of Country Nodes
CONSIDERATIONS to keep in mind
DIVERSITY between “NODES”
National ELSI issues
CAPABILITIES of “NODE” in addressing issues
Experience of HVP Node Member
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7. Accreditation of Country Nodes
EVALUATION
CONTROL
VERIFICATION
CERTIFICATION STANDARDS CHECK
MONITORING
QUALITY CONTROL
EXAMINATION
REPORT BACK
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8. Accreditation of Country Nodes
INTERNATIONAL SCIENTIFIC ADVISORY BODY
INTERNATIONAL COORDINATING BODY
HVP ETHICS COMMITTEE
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9. Accreditation of Country Nodes
HOW
REGULAR SELF-REPORTING
CONTENT of REPORT
SUPPORTING Documents
PEER REVIEWED
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10. Accreditation of Country Nodes
eg 2 yearly – before HVP biennial meeting ?
PEER Reviewed pre-HVP meeting ?
FEEDBACK to Node
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11. Accreditation of Country Nodes
Peer Review
FEED BACK – constructive, offer to assist, ....
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12. Accreditation of Country Nodes
Can a Country Node Lose Status?
If so, on what GROUNDS ?
If so, can you recognize a replacement COUNTRY NODE
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13. ? Matrix for ASSESSING Genomic and Genetic Services in a COUNTRY
14. ? Matrix for ASSESSING Genomic and Genetic Services in a COUNTRY
Kindly obtained from Helen Robinson & Tim Smith
15. ? Matrix for ASSESSING Genomic and Genetic Services in a COUNTRY
Kindly given by Helen Robinson & Tim Smith
16. Follow up assessment
? Matrix for ASSESSING Genomic and Genetic Services in a COUNTRY
Kindly given by Helen Robinson & Tim Smith
Notas do Editor
Four overlapping pillars:They are not mutually exclusive: they are merely a way of organising ideas and priorities and should not be seen as siloing or restricting ideas or informationWe should be looking for activities and projects that combine more than one pillarThe four areas are identified as a means of grouping related activities for measurement and reportingSetting Normative Function:Defining the standards, systems and infrastructure that comprise the Human Variome Project as well as the processes an best practices that govern their operationBehaving ethically:Ensuring that everything we do is done in a manner that is aware of the ethical, legal and social differences that span the world and our consortium and that the Project is seen to be at the forefront of national and international debates of these issues.Sharing Knowledge:Sharing the techniques and best practice for collection, curation, interpretation and sharing of genetic variation data,providing public education initiatives and sharing of knowledge to advance the field of medical genetics and genomics to those who can influence the growth of the fieldBuilding Capacity:Working with stakeholders in countries and regions to increaseeducation andskills training and integrate medical genetics and genomics into public health programs