Leveraging ethics to guide HIV research priorities and policy: Q and A with Dr Jerome Singh

July / August 2019 | Volume 18, Number 4

Full July / August 2019 Global Health Matters newsletter [PDF <1M]

Jerome Singh, LLM, MHSC, PHD

Jerome Singh became head of ethics and law at the Centre for the AIDS Programme of Research in South Africa (CAPRISA) after completing a year-long training program in bioethics, supported by Fogarty’s AIDS International Training and Research Program (AITRP). In addition to his role at CAPRISA, he teaches at the University of Toronto’s school of public health and serves as a consultant on health law to the South African Law Reform Commission. Also a co-chair of the HIV Prevention Trial Network’s ethics working group, Singh has served as a consultant to the South African law reform commission on health law.

How did Fogarty training affect you?
The AITRP fellowship was life-changing. Prior to doing the training, I was teaching at the Howard College School of Law in Durban, South Africa, and would have been happy doing that until I retired because I was unaware of what else was available. After the yearlong fellowship at the University of Toronto’s Joint Centre for Bioethics in 2002-03, career opportunities abounded. Even before returning to South Africa, I was asked to lead the ethics department at CAPRISA, which focuses on research into HIV prevention, pathogenesis, and TB/HIV treatment. Within a year of finishing the training, the University of Toronto offered me a faculty position. I’ve worked with global organizations like the Bill & Melinda Gates Foundation, Médecins sans Frontières and the U.N. None of these opportunities would have been possible without the Fogarty fellowship. It’s been a fantastic journey.
Thanks to the training, I’ve also helped build capacity in others over the years. It’s safe to say I’ve trained thousands of people, from short-term courses sponsored by Fogarty’s Medical Education Partnership Initiative (MEPI), all the way to Ph.D. supervision. I wouldn’t have been able to do capacity building at that level had I not undergone the immersive AITRP training.
What is your role at CAPRISA?
I review CAPRISA protocols and make sure they comply with national and international research ethics standards. I also draft policies, data-sharing agreements, memoranda of understanding, etc. Separately, I make the case for why certain science should or should not be done. Let’s say you wanted to do an HIV pre-exposure prophylaxis, or PrEP, study on adolescents. Because of regulatory ethics concerns, such as disclosure obligations, they are a difficult population to study and, as a result, are often under-researched. My job involves putting together an ethics case, a legal case or a human rights case to show why it would be ethical to conduct research on adolescents, or unethical not to. I’ve also done scholarship on why unreasonable or irrational government policy is a violation of human rights, illegal or unethical, and on the fact that, even if something is in accordance with the tenets of human rights and is lawful, it isn’t necessarily ethical.
Can ethics influence government policy?
They can and, in South Africa, they have. When I started at CAPRISA, Thabo Mbeki was president. He questioned the link between HIV and AIDS and resisted rolling out antiretrovirals, or ARVs. It was a difficult time to do science in South Africa. But an ethics-focused argument combined with a tactic of shaming the government morally, and a constitutional court judgement helped to change things.
The ethics argument was that while the government wasn’t acting unlawfully, its inaction was unethical. Civil society activists argued that not providing treatment to people with HIV violated their human rights. When the Constitutional Court of South Africa ordered that pregnant women be provided with nevirapine, the government began moving slowly toward the universal roll out of ARVs. Eventually, South Africa went from being a country where irrational executive decision-making denied us ARVs to having the biggest rollout program of ARVs globally. Ethics helped achieve that.
Another example lies in the multi-country, UNICEF-funded study that explored how ethical, social, and cultural factors impact on adolescent age-of-consent issues, and WHO guidance on ethical considerations in planning and reviewing research studies on sexual and reproductive health in adolescents. I led both projects, which UNICEF and the WHO are hoping will influence government policies globally.
How does LMIC training benefit the U.S.?
Providing research grants and capacity building programs in low- and middle-income countries (LMICs) is diplomacy you can’t put a monetary value on. It creates research opportunities that aren’t possible in the U.S., and the U.S. government gets the prestige factor of being associated with major breakthroughs. While some countries give LMICs infrastructure loans to build bridges or shopping malls, the U.S. invests over the long term in the health of people of the developing world and the knowledge-base of LMIC scientists. Bridges can collapse in 10 years, malls come and go, but this U.S. investment helps scientists on both sides advance their careers, allows people in LMICs to live longer, healthier lives, and endears Americans and the U.S. government to people in those countries. It’s a win-win situation.