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Invited Commentary: Report on the Genetics, Primary Care, and Developing Countries Workshop

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by Sylvia Metcalfe

In 2006, at the International Congress of Human Genetics (ICHG) in Brisbane, a group of people with an interest in genetics education took part in a short workshop to discuss the notion of developing an International Genetics Education Network. The envisaged purpose of this network (IGEN) is to facilitate human genetics education at an international level by promoting and sharing expertise and resources, with its activities drawing on evidence-based educational principles.  It was agreed that the primary focus of IGEN would be on health professionals. IGEN’s first global activity was a one and a half day satellite workshop at the 2011 ICHG in Montreal, entitled: Genetics, Primary Care, and Developing Countries.

The concept of this workshop was to bring together teams from developing countries and an expert faculty to consider the integration of genetic medicine into mainstream clinical practice.

The objectives were to:

  • Understand the current situation in terms of education and services for clinical genetics in each country 
  • Ascertain the challenges in integration and education of clinical genetics services
  • Formulate strategies and capacity building for integration of genetic medicine into mainstream clinical practice
  • Develop general plans for improvement of genetics education and practice in each country.

The original intention was that each country’s team would consist of a clinical geneticist and a non-geneticist clinician who is an opinion leader in medical education. Invitations were sent out through the various human genetics societies and IGEN contacts for teams to apply.

The final mix of participants varied somewhat, reflecting differences in genetics services of certain countries and particular interest in genetics education. Final participants included some laboratory geneticists as well as participants from countries which, whilst not classified as developing (based on World Bank criteria), had genetic services and/or genetics education programs that were in their infancy, or who were based in USA but engaged in educational activities in developing countries. Furthermore, there were a few applicants (from Bahrain, Mongolia and Sudan) who were unfortunately denied visas.

Ultimately the workshop was attended by 35 participants from 16 different countries, including China, Egypt, India, Jordan, Sri Lanka, Thailand, Vietnam as well as Brazil, Canada, Chile, Cuba, Saudi Arabia, Turkey and USA, with ten faculty (organisers, speakers and facilitators) from Australia, Canada, Switzerland (originally from Iraq), UK and the USA.

The program began with an evening welcome session when participants introduced themselves and gave an overview of the current state of genetics services and genetics education in their respective countries, their role in integrating genetics into mainstream clinical practice, and challenges in achieving this integration. This was followed by an introduction by Prof Peter Farndon (UK) of the scope and development of genetic services, with general discussion led by Prof Judith Allanson (Canada). People seemed to enjoy this opportunity to share their experiences and were very slow to leave!

The next day started with three formal presentations and questions: the keynote address by Prof Aravinda Chakravarty, USA (Relevance of genetics to personal and public health in developing countries); Sharon Terry from the Genetic Alliance, USA (Patient and family perspectives in genetic medicine, importance of role of families as advocates for services and education); and Prof Hanan Hamamy, Switzerland/Iraq (Consanguinity in the developing world).  These were followed by two breakout sessions involving facilitated small group discussions and feedback/general discussion. The first was preceded by a short presentation by Prof Sylvia Metcalfe (Australia) on frameworks for determining educational needs to inform strategies, which then formed the basis for discussion. The second breakout session involved discussion of strategies for engagement and teaching. Participants were then asked to consider developing action plans and these will be submitted and collated in the next couple of months, with a review of their progress 6-12 months after the workshop.

Participants received a pack of resources which added to their enthusiasm for the workshop. They expressed a keenness to continue the dialogue and to expand their networks. Video recordings of the sessions will be available to participants through an online networking group and there are plans to write a formal report of the workshop and subsequent activities.

Finally, it must be noted that the workshop relied heavily on sponsorship from a number of sources, and delegates from developing countries received travel support to attend.  See the table below for a list of sponsors.  

On behalf of IGEN: Sylvia Metcalfe, Joe McInerney, Peter Farndon, Kunal Sanghavi and Judith Allanson

Meeting Supporters

  • Genome Quebec (Canada)
  • International Congress of Human Genetics (ICHG) Organizing Committee
  • The American Society of Human Genetics (ASHG)
  • European Society of Human Genetics (ESHG)
  • National Human Genome Research Institute (NHGRI)
  • (U.S) National Institute of Child Health and Human Development
  • (U.S) Canadian College of Medical Geneticists (CCMG)
  • The Menzies School of Health Research
  • (Australia) Children’s Hospital of Eastern Ontario (CHEO)
  • (Ottawa, Canada) Human Variome Project
  • (Australia) Mclaughlin Centre,
  • (Toronto, Canada) The University of Toronto 
  • (US) National Coalition for Health Professional Education in Genetics (NCHPEG)