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Public Communication about CHIM: What Is the Role of the Media?

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Independent Journalist and Researcher

Summary

This commentary starts from the observation that some Indian scientists are discussing the possibility of introducing the Controlled Human Infection Model (CHIM) of research in order to develop biomedical technologies such as vaccines. CHIM studies involve the deliberate introduction of an infectious agent into a healthy person in order to observe the development and progression of the disease, or to test potential treatments. Noting that this idea would obviously be alarming to the general public, Sandhya Srinivasan calls for public discussion on this research model before it is considered for introduction in India.

Srinivasan describes arguments commonly made in favour of CHIM - that it would speed up research and reduce costs substantially; that it gives researchers information not available through the current research models; that it would be conducted with the utmost care and precautions; and that depending on CIHM research for technologies for people in developing countries may be both scientifically inadequate and ethically problematic. These arguments would be made in the course of public communication on CHIM.

After stating that public communication is used to get the public on board with government programmes, to explain technicalities, to clarify doubts, and to build public support, Srinivasan distinguishes between such public communication and journalism. Journalists are charged with educating the public so they can make good decisions. This requires not only giving accurate and clear explanations of complex issues, but also reporting on debates and presenting competing narratives. Srinivasan discusses this issue with reference to controversies in vaccines and the immunisation programme: "....It is necessary to study, understand and explain not only the public health justification for a vaccine in the government's programme but also the debates on it within the research and public health communities."

In the case of CHIM, a public communication programme would dispense the information necessary to get public support. But the media's job "is not to convince the public of the need for CHIM - or any other research model. The media must provide information and analysis that represents the public's interests, and enable the public to make informed decisions."

Just as the media has these responsibilities, Srinivasan argues, the government has the responsibility to be transparent and to engage the community in its plans. "Unfortunately, the government often fails on this count." She provides examples.

Srinivasan states that the starting point for journalists writing on CHIM must be the environment in which it would be conducted in India, with its "poor healthcare, poverty, vulnerabilities of various kinds, ethical violations, weak regulation, and industry's impunity." The history of health research in India is full of reports of harmful experiments conducted on vulnerable groups, and without voluntary and informed consent. There is also a concern that research agendas are driven by funding bodies interested in making technological fixes that benefit private industry, rather than addressing the social determinants of health. Finally, the entire research enterprise, including its regulation, is hidden from public view, and major violations have come to light not because of the regulators' actions but those of advocacy organisations and the media.

On behalf of the public, journalists must ask questions on what CHIM is, why it is believed that it is needed, what the potential harms are, what measures would be taken to protect participants and the community, how the research would be regulated, and who would benefit from the findings. The media must also ensure that ethical arguments in support of CHIM are discussed. For instance, is it really "unfair" - as is implied by some researchers supporting CHIM - if it is used on subjects in the United Kingdom (UK) to develop a vaccine for Indians?

Srinivasan also notes that CHIM is just one among many potentially harmful research techniques, and all these techniques need to be discussed publicly. From her perspective, we need to talk about the ethics of conducting research on terminally ill people; of conducting research on patients in intensive care; of doing public health research on low-cost interventions, etc. We need to go beyond viewing public communication on CHIM as just precautionary practice, given the public distrust of research. It is time for us to promote better public communication of all health research, she contends.

Srinivasan concludes that, "When talking to the media about its interest in conducting human challenge trials, the research community will have to be ready to be honest about its plans, transparent in its functioning, and also ready to admit the possibility that we should not introduce this technology in India."

Source

Indian Journal of Medical Ethics, Vol 3, No 4 (NS) (2018). https://doi.org/10.20529/IJME.2018.088; and emails from Sandhya Srinivasan to The Communication Initiative on February 12 2019. Image credit: JSI