Dr. Diego S. Silva recently joined the University of Sydney as a lecturer in Bioethics at the Sydney Health Ethics group (SHE). Dr Silva comes to Australia from Canada, where he previously held a tenure track position as Assistant Professor at Simon Fraser University in British Columbia (2015-2019). He has produced a number of TB-related outcomes, and is an active member of many associations affiliated with TB-CRE investigators, including the International Union Against Tuberculosis and Lung Disease.
The TB-CRE welcomes Diego to our network! We spoke with him this month to get to know more about his work with ethics and human rights in TB.
What first inspired your interest in Tuberculosis?
I became interested in TB in a roundabout way, actually. Ever since I was an undergrad, I’ve been fascinated about questions related to freedom and autonomy - what do they look like, and what are the limits therein? When it came time to do my PhD, I was looking for a public health case that could serve as a real-world test of the harm principle (simplistically put, you’re free to do as you’d like until your actions threaten someone else’s well-being). My supervisor, Dr. Ross Upshur, suggested that TB would, unfortunately, provide a fascinating socio-biological case. And so I read up about the disease, its social dimensions, and I agreed. I’ve now been working on ethics and TB for about a decade (yikes!), and I feel emotionally invested in the cause, in both the TB survivors and the broader community. So despite working on other subjects related to public health ethics, I feel that the TB community is my ‘home’, as it were.
What do you consider to be the major ethical/human rights challenges Tuberculosis presents to Australia and our region?
Migration and surveillance, and the overlap between the two. With the use of whole genome sequencing and other next generation sequencing to assist in traditional public health contact tracing and surveillance, the challenges associated to surveillance (e.g., privacy, trust, etc.) are heightened. In some instances, given the precision associated with new -omic techniques, new ethics challenges arise (e.g., should we ask who’s to ‘blame’ for transmission?). Coupled with surveillance, given the migration patterns in and out of Australia, questions about cosmopolitanism (i.e., rights and interest of non-citizens in a global world) become paramount given who’s at risk for TB infection and disease. But the added unethical struggle (and in my mind there’s no doubt it’s unethical) is the rise of right-wing populism and its specifically anti-immigrant rhetoric and policies. In other words, those of us working in TB must be aware and respond to the broader context in which our work occurs. In 2019, science and public health are political, whether we like it or not.
How have these challenges been under-appreciated by TB research to date, and why is this a problem?
In a study my colleagues and I published on this year, our participants – who were TB clinicians and laboratory scientists – noted that the scientific TB community is ‘boring’ and lacking in the spirit of advocacy. At the same time, others noted that civil society often get the science wrong, or overstate scientific progress, for political gain (however well-intentioned it may be). So one challenge we need to think about and need to tackle, as a community of clinicians and researchers, is how to promote scientifically sound advocacy, including the need for scientists to recognise that it is insufficient to claim that they don’t want to engage in political issues. I say: if you’re working in the field of TB, you’re situated in a political minefield, whether you like it or not. It’s up to each scientist to decide how to respond to that. And this then ties back to the issue of surveillance and migration – for example, how will members of the TB-CRE communicate science in a truthful way that doesn’t further stigmatise immigrants? How can we get build trust around whole genome sequencing both with the public, but also between laboratory folks and clinicians? Many researchers are already trying to address these and other related questions, and that’s fantastic; we need to keep it up and ramp it up.
What is your vision for ethical TB research going forward, and how might TB CRE investigators ensure that human rights are a priority in research?
I think there are two small, but concrete ways to make TB research more ethical: first, engage with those communities that will be effected by the research, not once a new drug regiment or diagnostic is ready for roll-out, but at the inception of projects. This doesn’t mean that lay people and TB survivors will make scientific contributions (though who knows, they might), but that ethical issues that may exist in the blind-spot of researchers come to light. Second, work with ethicists from the design-stage onward. The TB-CRE, as I knew and as I’m quickly learning, is ahead of the curve on this front, and have wonderful members who are sensitised to ethics. Having Justin Denholm as a chief investigator certainly helps, too!
Find out more, or get in touch with Dr. Silva by email at firstname.lastname@example.org.
Welcome to the TB-CRE Diego!