Starting from scratch in Sri Lanka

Commitment against obstacles and basic knowledge was vital, but books and journals were a scarcity. This demanded networking with experienced twin researchers. A partnership model for collaboration was used for mutual scientific benefits but not for economically cheaper research in the developing world. Forming a multi-disciplinary team was essential, but for locals twin research was new. Funding was hardest without prior twin research. We were compelled to seek help from commercial establishments but were aware of conflict of interests.

Therefore, guidelines were developed on bioethics, consent, data collection, storage and access to the twin database and human biological material, funding, commercial exploitation, international collaboration, and authorship to safe guard the Sri Lankan interests as the moral “rights” and “wrongs” are not absolute but vary with the culture. We initiated a volunteer register launching a competition through media. 4684 multiples registered. Most were less than 30 years. Adaptation and preliminary validation of a zygosity questionnaire was carried out.

Using birth records to trace younger twins were feasible, but encountered many problems for older twins. Use of different strategies to establish a population-based registry is possible as evident by feasibility studies. Twins born in the whole island from 1992 are available to us through the Department of Birth Registration. We are now supported by a grant from the Wellcome Trust. Newsletters for twins and researchers are published. Local capacity building is in progress.

A Multiple Birth Organisation was formed to represent the interests of multiples and to raise awareness on their issues. It will work with professionals, statutory organisation to initiate service development.