In the news

Find related articles on

Latest News

Greater input to genetic research from developing countries

Analysis of a study published in a science journal   |   By Dr Gurdeep Sagoo   |   Published 3 December 2010
Study: Recommendations for genetic variation data capture in developing countries to ensure a comprehensive worldwide data collection
By: Patrinos G.P. et al. (14 authors total)
In: Human Mutation
Link: http://dx.doi.org/10.1002/humu.21397
What this study set out to do:

To create recommendations and guidelines that encourage and allow greater participation of developing countries in documenting the human genetic variation observed worldwide.

How they went about it:

Building on the Human Variome Project (see previous news), two planning and implementation workshops in 2008 and 2010 allowed participants from both developing and developed countries to discuss the importance of developing world participation. They also documented current work on National/Ethnic Mutation Databases (NEMDBs), and considered how to harmonise and extend data collection in order to maximise utility.

Outcome:

The following seven guidelines and recommendations were made.

  • Develop procedures to include clinicians and researchers in developing nations, mostly by creating networks among those of common interest.
  • Create international networks from closely related populations to enhance communication, interaction, and initiate research networks between them.
  • Foster communication, interaction, and research networks between developing and developed countries.
  • Ensure that the database management systems that are being used or developed can be utilised by those in a limited resource environment.
  • Provide support to developing countries to build capacity and to fully participate in the collection, analysis and sharing of genetic variation information.
  • Develop a framework to facilitate interactions between the coordinating centre and national, regional and international agencies.
  • Ensure that all ethical, legal, religious, and social issues are thoroughly considered when NEMDBs and/or data capture projects are launched in developing countries.

    • Conclusion:

    Documenting these population and ethnic specific genetic variation data in developing countries can produce real and tangible benefits not only in improving disease understanding and improving health but also in economic benefit (such as increased human capital).

    Our view:

    Whilst inclusion of data from populations in developing countries is important, the value of genomics for such countries is not merely via large-scale research projects, but also in using existing and emerging genomic technologies for immediate public health needs (see recent report on global public health in the genomic era). Several of these recommendations are also implicitly included in the PHG Foundation Framework for action on birth defects project.

    Keywords: Birth defects, Genes And Ethnicity, Genetic Databases, Other Genome Projects, Research Methods/Standards

    Comment on this article