On 23 and 24 December 2013, the Department of AIDS Control (DAC), India, in collaboration with the CDC and FHI360 organised a capacity building workshop on ethics in HIV/AIDS research with a special focus on the Indian context. The event was attended by a broad spectrum of stakeholders in HIV/AIDS research in India.
With such a broad audience to cater to, the event looked at the ethical issues of HIV/AIDS research from a multidisciplinary outlook with a view to integrating the skills and research demands of the participants. Richard Cash, senior lecturer on Global Health in the Department of Global Health and Population of the Harvard School of Public Health, and a visiting faculty at the Public Health Foundation of India added a unique touch to the programme by inviting the participants to an open debate by launching discussions around “case scenarios” with complex ethical considerations. Personally speaking, these participatory sessions transformed the workshop into a two-way, interactive learning experience, which has left a deep impression on me. Workshops on ethics always run the risk of becoming a one way, didactic affair where the participants are just passive observers. This strength of the current workshop was that it transformed into a two way learning affair for all concerned. The participants gained from the speakers’ knowledge and the speakers gained insights and perspectives into the concerns and demands of the ground level researchers in India.
HIV/AIDS is a complex topic and is an extremely culturally nuanced issue in a traditionally conservative and heterogeneous Indian cultural background. Research in HIV/AIDS in India has to deal not only with research ethics and legal questions, but also with a subtle, yet undeniable, cultural connotation. Prickly issues like morality and personal biases in sexuality research were dealt with, and often, the participants, who represented a cross-section of the HIV/AIDS researchers in India, came up with their personal experiences and anecdotes that further enriched the discussions.
Another aspect that created a lot of controversy and debate was providing compensation to participants of clinical trials. Heated debates were held on degrees of compensation and where compensation ended and inducement began. What added to the controversy was that financial compensation could be construed as a method of inducement, especially in the developing world, where implementation and understanding of ethical and legal frameworks might be lax. Case studies from South Africa were presented that dealt with not only these issues, but also the difficult question of post trial provision of treatment and tried to answer the question of a researcher’s debt to the society he worked in. At the time of the event, India was facing a strange situation of suspended animation of clinical trials as the Supreme Court was deliberating on the issues of compensation to clinical trial participants. This was a timely debate that integrated many of the social, ethical, financial, and legal questions that are often overlooked in the rush to talk about the impact of a clinical trial.
For students of public health like me, this was a wonderful opportunity to interact with a great group of thinkers and doers. The event helped us deal with a lot of ethical and moral questions we all had; but, at the same time, it also raised a number of questions whose answers we have to pursue in the days to come. The success of the event was in the fact that it got together researchers and thinkers on the same platform and led to a brilliant amalgamation of ideas.
The workshop left us with the take home message that research is never divorced from social-economic-cultural consequences. The group also agreed that in certain cases ethical questions needed to be resolved keeping the local cultural context in mind. A “one-size-fits-all” solution for ethical quandaries might feel like an attractive option, but it is usually not that easy and in certain cases might actually backfire. Cultural nuances in issues like sexuality, gender biases, economic compensation, and consent needed to be highlighted. Another emerging theme was the futility of simply “informed” consent, as that still appeared to be a one-way traffic. The need to focus on “understood” consent, where the participant was actively involved in comprehending the portent of the information rather than just being a passive recipient of information was stressed. An underlying theme of almost all discussions was to stay true to the four foundations of ethical research: non-maleficence, beneficence, justice, and autonomy.
I declare that I have read and understood the BMJ Group policy on declaration of interests and I have no relevant interests to declare.
Pranab Chatterjee is a resident (PGY-2) in the Department of Community Medicine at the University College of Medical Sciences in New Delhi, India.