When India's Right to Information Act came into force in 2005, the legislation's text acknowledged the conflict that could arise from revealing certain information, pointing out that there was a need to 'harmonise' the interests of the public and those who used their democratic right to seek vital information. Lawmakers were wary of possible problems, and one exemption clause in the RTI Act thus specifically states that 'information which relates to personal information the disclosure of which has no relationship to any public activity or interest' need not be disclosed. However, a significant amount of information that lies outside the purview of this section is frequently sought. One recent example of a 'successful' RTI application highlights the potential for this potent legislation to lead to inadvertent results.
In 2008, the Indian media published information about an RTI request in which Rahul Verma, the founder of an NGO called the Uday Foundation for Congenital Defects and Rare Blood Groups, was seeking information about clinical trials from the All India Institute of Medical Sciences (AIIMS) in New Delhi. This revealed that 49 sick children had died over the course of 30 months in the AIIMS paediatrics department while undergoing clinical trials. Predictably, this led to public outcry and a media firestorm. News reports suggested that children below the age of one were being specifically recruited in these then-ongoing trials, and that children of parents below the poverty line were possibly being targeted for recruitment as guinea pigs. Many newspapers gave these stories catchy headlines that suggested bad patient care and neglect in AIIMS, as well as exploitation and maltreatment of sick children from poor families.
What is known is that from January 2006 to July 2008, 49 out of 4142 children participating in these clinical trials died, a death rate of 1.18 percent. The actual outrageousness of this figure is far from clear. According to data published by the UN's children's agency in 2009, the all-India under-five mortality rate was 6.6 percent from all causes. A recent paper published in the reputed medical journal Lancet shows that pneumonia and diarrhoea together account for nearly 50 percent of deaths in the age group of 1-59 months. Thus, the under-five year mortality rate due to infection would be around 3.3 percent. The death rate for newborns less than one month old is 3.4 percent, and the Lancet report indicated that 27 percent of these deaths are due to infection. As such, the death rate for newborns would stand at around 0.89 percent. Because the mortality rate quoted in the AIIMS study includes deaths in newborns as well as those less than five years of age, a mortality rate of 1.18 percent in clinical trial-enrolled patients cannot in truth be called excessive.
Further, while hospital care in all likelihood brings down mortality rates, big public hospitals like AIIMS which admit patients in advanced stages of illness referred by other small hospitals, can have higher mortality rates. While an old report from AIIMS states 2.3 percent as the net death rate in patients admitted to AIIMS during 1999-2000, a 2008 paper looking at distribution and proportion of death in the paediatrics department of R G Kar Medical College, in Kolkata, reports a 9.87 percent death rate in all children admitted to the hospital over the course of a year. Though any death is a loss of precious life to the family involved, the death rate observed in AIIMS was, again, not unusually or worrisomely high.