Sharing Knowledge is one of the four key themes underlying Project Roadmap 2012-2016, the Human Variome Project’s strategic plan for the next five years and a focus for this meeting. This session built on the outcome of the Project’s Education Satellite meeting, held in November of 2010 and sought to clarify and expand the Human Variome Project’s precise role in education and skills development initiatives. Specifically, it discussed: the global importance of learning and development, including the inclusion of young and early-career clinicians and researchers; existing national and international resources and initiatives that can be leveraged; the role of assessment, evaluation and accreditation of curriculum at the national level; and the Project’s role in medical education, post-grad training, professional development and continuing education for clinicians, diagnosticians, counsellors etc.

1. Sharing Knowledge: Human Variome Project
Initiatives in Education and Skills
Development
Linda Roberts
University of Vermont
College of Nursing and Health Sciences
12 June 2012
UNESCO, Paris, France

2. Background
HVP Education Working Group
 Independent group, emerged in 2008 from 3
other groups: Ethics, Data Integration & Access,
and Developing Countries.
 Charged to conduct an Educational Needs
Assessment, completed in Feb 2010 and
presented at HVP Forum in November 2010
UNESCO, Paris, 2012 2

3. Methods
 A Web-based survey was conducted to solicit
thoughts and opinions of the HVP constituency
 Email invitation in Feb 2010 to participate
 Included HVP members and colleagues and others
 Menu with choices to check, and Open-ended
responses
UNESCO, Paris, 2012 3

4. Survey Content
There were 6 questions asking about:
• Purpose of the working group
• Specific unmet educational needs
• Country specific emerging issues and
challenges
• Ideas for structuring programming
UNESCO, Paris, 2012 4

5. 101 Respondents, all continents
Types of people responding Organizations represented
Clinical Geneticists Molecular laboratories
Molecular Genetics Faculty Centers for Genomics
PhD Researchers Hospitals
Database Coordinators Government research labs
Informaticians Centers for Genetics
Policy and Standards Education
UNESCO, Paris, 2012 5

6. 80% Perceived a Need for Educational
Sessions
Question 3c. Who should these potential educational targets be?
UNESCO, Paris, 2012 6

7. Specific Unmet Educational Needs
Question 3a and 3b: What specific unmet educational needs exist? What topics do you think would
be useful for educational sessions for HVP participants?
Responses
Specific Diseases
Molecular Diagnostics Technologies
Databases
Informatics / Interpretative software
Methods to interpet variants
ELSCI*
Regulatory / Governmental Policy
Other needs**
0 20 40 60 80
*Ethical, Legal, Social, Cultural Implications
UNESCO, Paris, 2012 7

8. Approaches for Structuring Educational
Programming
Question 5: How shall the HVP approach structuring proposed Educational Programs?
UNESCO, Paris, 2012 8

9. What should the purpose of this
Education Working Group be?
 Themes from n=71 responses
 Collaboration – help in accessing educational
resources, standardizing and unifying of data
 Sharing- e.g. curricula, tools
 Whom to Educate- stake holders, other scientists,
policymakers, patients. There was an urgency to
“POPULARIZE” and make people aware
 Development of teaching/training materials
UNESCO, Paris, 2012 9

10. Country Specific Challenges
Question 4b: Are there issues or challenges specific to your country that you would like
to see the HVP address?
Comments:
 Interpreting/classifying variants, correlate with
pathology (n=5)
 Lack of Funding (n=4)
 Policy makers/regulation (n=4)
 Cultural delays in adoption (Italy, India, Kuwait)
UNESCO, Paris, 2012 10

11. Existing Educational Standards & Core
Competencies
 ESHG – European Society of Human Genetics
 NCHPEG – National Coalition for Health
Professional Education in Genetics
 HGSA – Human Genetic Society of Australasia
Assessed curriculum: Knowledge, Skills, Attitudes,
Learning Objectives
UNESCO, Paris, 2012 11

12. Action Items from the
2010 HVP Education Forum (1)
Validate educational tools and programs with
international societies (ASHG, ESHG, etc)
Develop validated Web resources:
Target MDs and other professionals, public
Translate into multiple languages
Use Social Media
Enhance the HVP web site and Facebook page, blogs
UNESCO, Paris, 2012 12

13. Action Items from the
2010 HVP Education Forum (2)
Write a paper to bring up these issues:
Genetic disease is important
Primary care MDs are inadequately trained
Use (re)-certification exams as incentive
HVP can provide tools and standards
Engage journalists, “write the story”
UNESCO, Paris, 2012 13

14. Acknowlegements
Richard Cotton Suzanne Albustan
Carol Barash Rania Horaitis
Elizabeth Shepard Heather Howard
Ian Phillips Lauren Martin
Ming Qi Jumana Al ama
Ingrid Winship Hamed Sherifa
Ray Dagleish Sue Povey
Agnes Bankier Susie Sobrido
UNESCO, Paris, 2012 14

15. Collaboration Standardize / Unify data
-among different groups
Access existing resources
Sharing of
Education
Information -stakeholders
-other scientists and young scientists
- materials/workshops
-popularize/raise awareness
Teaching/Training -Curriculum
- Scientists
Patient Education
-strategies for patients/ familiarize
individuals
UNESCO, Paris, 2012 15

16. Topics to Discuss
• Curriculum Assessment and Accreditation
• Role for HVP in education at multiple
levels of medical training and the public
• Existing national and international
resources that can be leveraged
• How to use clinicians and scientists,
especially early career
UNESCO, Paris, 2012 16

17. HVP Pillar : Building Capacity
• What value-added contribution can HVP make – not re-inventing the wheel
or duplicating?
• HVP secretariat, Consortium members, greater global stakeholders – ripple
effect of Human Variome Project
• Coordination, facilitation and clearing house
• Focus on developing countries; international collaboration
1. Curriculum, etc. (recommendations for online and free educational
resources)
2. Role at multiple levels (advocacy with politicians, training workshops on
HPV and specific subjects)
3. National & international resources (NGOs, scientific associations, societies.
Networks, intergovernmental organisations, e.g ICGEB, UN)
4. Early career scientists and clinicians (promote “twinning” between resource-
rich and resource-constrained groups/countries