Listening to the voices of the general public in India on biomedical research – an exploratory study.

ABSTRACT

Medical research, from clinical trials to novel research on stored samples, is growing rapidly in India. Ethical regulations largely reflect standard international guidelines and the norms of “good clinical practice”. Through in-depth interviews, this study aimed to explore the perceptions, motivations and concerns of the public with respect to participation in clinical trials and biobanking-related research. It was found that the expectation of therapeutic benefit reflects “therapeutic misconception” and this, along with a poor understanding of research, leads to favourable participation in clinical trials. A relatively low level of awareness and knowledge of health matters and research (health literacy), along with the differences in the power of the doctor and the participant, lead to an unquestioning trust in the physician or the institution conducting the research. “Informed consent” is thought to protect the interests of the researcher and the institution rather than the participants’ rights. Biobanking research was very new to the participants and relatively unknown. Thus, it has not yet filtered into the public consciousness. As a result, the perceptions of the general public do not appear to be sufficiently evolved.