Public engagement in the context of a CHIM study.

Abstract

Public engagement especially in new and contested areas of medical research is an essential ethical requirement. It helps to build trust, to embed ethical discourse in public beliefs and values and widen the accountability and the governance of biomedical research. Historically, ethical codes resulted from public protest following unethical medical research practices. Unethical practices do continue to a certain extent, primarily among unempowered communities. The need for public awareness, public deliberation and public advocacy are even more important in a country like India, where "research" is not understood, where paternalism on the part of the health professional, and the non-questioning attitude of the patient/participant have been customary, followed in recent times, by mistrust and an expectation of corruption in the public mind when dealing with a healthcare set up. CHIM studies carry various levels of unknowns. There are challenges of public non-comprehension of the need for being 'infected'; of families and communities being at risk; of possible high levels of compensation being offered as inducements; of other public health / preventive measures being supplanted. It is important for researchers and regulators in India not to rush into implementing such studies but to first engage with the public, listen to their concerns; and initiate deliberative mechanisms for public - researcher dialogue; and invest in public advocacy.