Sri Lankan Twin Registry: Challenges, Barriers and Lessons Learned

As with any new initiatives, we faced many obstacles. Determination, commitment and team work were our strengths. Acquisition of basic knowledge was vital. This demanded networking with experienced international twin researchers. Collaboration was based on mutual benefits and scientific merit, but not on economically cheap and easy research in the developing world.

As twin research unites diverse disciplines, forming a multidisciplinary team was essential, but for most local colleagues the concept was new. However, enlisting support was not difficult but consolidating what was achieved was challenging. Funding was the most difficult, as it so competitive and is usually available for people with credentials. Local ethical framework was inadequate. Ethical guidelines had to be developed for informed consent processes, data collection, storage and access to the database and collection, storage and access to the human biological material including genetic material, funding, commercial exploitation, international collaboration, and dissemination of results and authorship.

This was to safeguard the Sri Lankan interests as the moral ‘rights’ and ‘wrongs’ are not absolute but vary with the culture. We initiated a volunteer register and worked towards a population-based register. Local capacity building for twin research was one of the main objectives of the project. We have not only managed to achieve this goal of 20,000 population-based twins in one district (25 of such in Sri Lanka) but also gained a wealth of experience through the whole process. These include how to face challenges, barriers and hurdles in establishing an ethical research culture especially in the developing world.