Partha Majumdar

Title: Ethical Dilemmas in the Conduct of Genomic Research: When Technological Developments Encounter Economic and Educational Underdevelopment

The phenomenal technological developments in the field of genomics, including whole-genome sequencing, has empowered researchers to undertake studies on humans that have important implications for health and disease. These technologies are being increasingly used in the developing world, where there is lack of commensurate economic and educational development. The data being generated by these technologies and the modalities of such data-generation through sample-sharing are enhancing the complexities of implementation of even the most basic ethical tenet – that of “informed consent” – in societies with low levels of literacy and with poor access to financial resources. I shall argue that under such circumstances, individual freedom (that is, freedom from intrusive interference by others, including the state) may be better guaranteed through societal and other governance arrangements in the conduct of genomic research. The safeguard of privacy and confidentiality, hallmarks of the quintessential ‘Western’ idea of justice and democracy, may have to be relaxed through public reasoning and engagement in order to better ensure individual freedom in the context of genomic research in a developing country.