'Reprioritise' genetic goals, developing nations told
[HYDERABAD] Developing countries need to review their research priorities in genomics and not blindly adopt developed countries' focus on complex lifestyle-related disorders, cautions an expert.
Hans Hilger Ropers, professor at the Max Planck Institute for Molecular Genetics, Germany, told SciDev.Net that developing countries "should not simply follow the trodden path of the industrialised countries" and need to "re-assess their genomics research priorities".
Ropers, attending the 13th Human Genome Meeting in Hyderabad, India, this week (30 September), expressed concern that genomics research has concentrated on complex multi-gene disorders — such as diabetes and heart disease — that are related to lifestyle changes and whose treatment would generate high profits.
Genomics scientists from developing countries such as India have followed this lead without paying attention to problems specific to their countries, he says.
Despite this focus, there is little evidence that solutions for complex disorders are in sight. Even by 2028, the biology of complex disorders may not be understood completely, according to Charles Cantor, co-director at the Centre for Advanced Technology at Boston University, who attended the HUGO meeting.
Due to the tradition of marriages between cousins, many developing countries tend to have more people suffering from severe disorders governed by a single gene than industrialised countries.
Ropers told the meeting that single gene disorders such as thalassaemia and specific types of mental retardation are being ignored and that they are the "biggest unmet challenge in clinical genetics".
Another major problem confronting developing countries is the absence of strong national guidelines and laws on the ethics of genomics research, and the absence of an open dialogue between policymakers, genomics and social scientists, and civil society organisations.
Darryl Macer, regional adviser at UNESCO's Asia Pacific office in Bangkok, said his office has often "struggled" in its efforts to encourage some Asia Pacific countries to develop national guidelines or laws on genomics, and that implementation is faulty in countries that do have some guidelines.
Key challenges facing genomics researchers include obtaining proper informed consent of participants in research, maintaining the privacy of participants, ensuring there is no discrimination against them, and ensuring the benefits of the research reach them.
Macer says it is not sufficient to just create genomics research infrastructure. Building the capacity of scientists in clinical research and of ethics committees, and creating a nexus between policymakers, genomics researchers, social science researchers and civil society organisations to address ethics issues is a huge challenge.