The return of individual research results and incidental findings from biobanking research is a much debated ethical issue globally but has extensive relevance in India where the burden of out of pocket health care expenses is high for the majority. The views of 21 ethics committee (EC) members and 22 researchers from Bengaluru, India, concerning the ethics of biobanking research were sought through in‐depth interviews using an unfolding case vignette with probes. A shared view among most was that individual research (...) results which are ‘actionable’ or have ‘clinical significance’ should be returned to the sample contributors through their treating physicians. This was seen as an ethical obligation and a moral duty on the side of the researcher to “give back” to the person who contributed to the research. The challenges foreseen were that of resources, both financial and personnel, for the time and counseling needed to accompany the disclosure of results. Perceptions of ‘ownership’ appear to influence the concept of benefit sharing. While benefit sharing in financial terms was considered ethically challenging, certain researchers and ethics committee members made a case for “two way altruism” where the researcher in return for the altruistic ‘valuable contribution’, shares with the contributor/ community, benefits of the research which could include research findings, improved patient care, and more affordable access to the new diagnostic tests or products arising from the research. This defines the emerging ethic of “giving back” which goes beyond individual rights and ensures reciprocity and distributive justice. (shrink)

In India, there has been a shift from using unclaimed bodies to voluntary body donation for anatomy dissections in medical colleges. This study used in-depth qualitative interviews to explore the deeper intent, values and attitudes towards body donation, the body and death, and expectations of the body donor, as well as their next of kin and representative religious scholars. All donors had enrolled in a body bequest programme in a medical school in South India. This study concludes that body donors (...) are philanthropists with deep-rooted values of altruism and service, who are often willing to forgo traditional religious and cultural death rituals. The next of kin are often uncomfortable with the donor’s decision, and this suggests that it is important that dialogue/counselling occurs at the time of the bequest, if the donor’s wishes are to be respected. Religious injunctions are often misinterpreted; this implies that religious leaders/scholars can play a significant role in addressing these misconceptions which are barriers to body donation. Body bequest programmes in India may be enhanced by positioning body donation as ‘daana’—giving without any expectation of return for a higher purpose, including ceremonies of respect in medical colleges. Furthermore, increased public engagement and awareness about body bequest programmes are also important to enhance participation. When medical students internalise what body donors expect of them, i.e. altruism, empathy with patients and becoming ‘good doctors’, it will help to ensure that the donation was not in vain and that the dead truly teach the living. (shrink)

Research using Controlled Human Infection Models is yet to be attempted in India. This study was conducted to understand the perceptions of the lay public and key opinion makers prior to the possible introduction of such studies in the country. 110 respondents from urban and rural Bangalore district were interviewed using qualitative research methods of Focus Group Discussions and In-depth Interviews. The data was analyzed using grounded theory. Safety was a key concern of the lay public, expressed in terms of (...) fear of death. The notion of infecting a healthy volunteer, the possibility of continued effects beyond the study duration and the likelihood of vulnerable populations volunteering solely for monetary benefit, were ethical concerns. Public good outcomes such as effective treatments, targeted vaccines and prevention of diseases was necessary justification for such studies. However, the comprehension of this benefit was not clear among non-medical, non-technical respondents and suggestions to seek alternatives to CHIMs repeatedly arose. There was a great deal of deflection—with each constituency feeling that people other than themselves may be ideally suited as participants. Risk takers, those without dependents, the more health and research literate, financially sound and those with an altruistic bent of mind emerged as possible CHIM volunteers. While widespread awareness and advocacy about CHIM is essential, listening to plural voices is the first step in public engagement in ethically contentious areas. Continued engagement and inclusive deliberative processes are required to redeem the mistrust of the public in research and rebuild faith in regulatory systems. (shrink)