Public Perception of Clinical Research

Research Element	Perceptions	Source	Potential Implications/Consequences
	Negative
Human participation	“Human guinea pigs”	Allahabad High Court [22]; PARTAKE survey [16]	Indians are exploited by foreign and rich industry entities for financial gain [23].
Human participation	Exploitation of vulnerable populations (illiterate or impoverished) [24]	Petition of Supreme Court [25]	Clinical trial applications put “on hold” amid revision of the regulatory system [19]
Adverse events	Violation of “right to live” under the constitution	Allahabad High Court [22]	Proposal to prosecute trial-related adverse events under the Indian Penal Code
Adverse events	Unnecessary and exploitative	Media [26]; activists; surveys [27]; government compensation committee [28]	Adverse events are always due to trial participation and therefore should be compensated for; hold on clinical trials; withdrawal of drugs with favorable benefit/risk ratios [29]
Placebo assignment	Violation of the right to effective treatments	Government compensation scheme [30]	Proposal to compensate study participants for lack of therapeutic effect [30]
Informed consent	The process is not “informed” and “consent” cannot be assumed; consequence of paternalistic model of health care [31]	National Human Rights Commission [32], media [33,34], activists, PARTAKE survey [16]	Addition of audio-visual recording to informed-consent process [35]
	Positive
Medical knowledge	Enhancing public health	Surveys [16,27]	Large majority endorses research
Human participation	Voluntarism	Surveys [16,27]	Majority interested in participating in research
Human participation	Altruism	Surveys [16,27]	Majority endorses altruism as the only valid motivation to participate in research

PARTAKE, Public Awareness of Research for Therapeutic Advancements through Knowledge and Empowerment.

Table 1: Examples of Public Perception of Clinical Research in India.

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