As part of the Fordham University Center for Ethics Education’s Advancing Health and Social Justice Web Series, Dr. Purnima Madhivanan from the University of Arizona and Dr. Rebecca Fielding-Miller from the University of California, San Diego led a panel on Thursday, March 11th, 2021 titled, Ethics and Global Health Research” to engage in discussion about global health research and ethical practices conducting clinical research in low-income areas. Drs. Madhivanan and Fielding-Miller are alumni of Fordham’s HIV and Drug Abuse Prevention Research Ethics Training Institute, which is directed by Dr. Celia Fisher.
Purnima Madhivanan, Ph.D., MBBS, MPH
Dr. Purnima Madhivanan’s research focuses on the issue of primary and secondary prevention of cervical cancer and the role of ethics in this research and preventative services. Dr. Purnima Madhivanan started the first women and children’s HIV clinic in India when she was a practicing physician as these groups would have excluded from healthcare system otherwise. At the time, women were getting diagnosed with HIV and cervical cancer, and were dying as a result of poor treatment. Dr. Madhivanan discussed three unethical clinical trials that occurred in India which investigated if well-trained physicians could screen and diagnose cervical cancer. As a control, the trails decided to not screen and withheld care from 141,000 women. She described that ultimately, the endpoint of this trial was mortality, and that this is not the ethical standard of care in clinical trials in the United States. However, the National Institutes of Health and other U.S. institutions provided funding for these trials. Dr. Madhivanan argued that this demonstrates the double standards of high-income countries, and how they take advantage of vulnerable people in low-income areas. These unethical practices occur due to the lack of adequate ethical guidelines and enforcement in low-income areas. Additionally, these experiments are not plausible in high-income countries due to the cost and long screen-processes. According to Dr. Madhivanan, bioethics and ethical research need to be held to the same standard throughout the world to prevent the mistreatment of individuals in low-income communities.
When asked about the importance of trust in research, Dr. Madhivanan shared findings from a recent study regarding the COVID-19 vaccine. After conducting 11 focus groups, she found that the main theme that emerged from communities of color was trust. She explained, “They would not trust the system, they do not trust the healthcare providers, and they do not trust the researchers at entry level…Now look at our vaccine situation, they are most needed in our communities of color. But those in the exact same communities that have the least access are less likely to take it because they don’t trust you enough. They want to wait and see.”
Dr. Madhivanan recommended that researchers need to build trusting, long-lasting relationships with the community. “…how do you build your relationships in the community and how do you nurture them. Sometimes it has to go beyond research. It’s not in the context of research of what happens afterwards. You have to first be able to show to your community that you’re there in their best interest…then they will be more likely to consider [participating],” she said.
Rebecca Fielding-Miller, Ph.D., MSPH
Dr. Rebecca Fielding-Miller’s presentation examined the effect research has on the participants of research trials and staff or front-line workers for the trials. In terms of global health, the research staff typically is composed of people from the community. The workers speak the local language and are culturally competent in ways that outside researchers are not. This provides researchers more and improved access to hard-to-reach communities. While senior or lead researchers typically remain in their home countries with greater access to psychological care and support, the research staff members living within the communities where the study is being conducted have less support and conversations about self-care. Potential issues with the significant power gaps between the staff members and the senior researchers include staff member burnout and emotional trauma potentially leading to low-quality research. Dr. Fielding-Miller analyzed these impacts in a study to understand the experiences of emotional distress and secondary trauma in front-line staff members in Swaziland and the strategies they had for resilience. The research team performed in-depth interviews from staff members that worked on studies involving cancer, child abuse, HIV, sexual violence, and LGBTQ communities. Negative impacts the staff members faced included individual risks (financial needs, for example), individual harm like mental health illness, and close relationships harm. Recommendations from the participants included opportunities for self-care and access to professional services.
When asked if participants in Dr. Fielding-Miller’s study felt that they had sufficient training by and support from their supervisors to deal with the dilemmas or the stress that they encountered, she replied that supervisors discussed how to structure workplaces to mitigate harms among the frontline staff. Dr. Fielding-Miller explained that the staff will come from social work or social science backgrounds and then feel that their skills are undervalued. Compensation is an additional issue. She said, “There can be very stringent hierarchies where people don’t feel comfortable talking with their supervisors. It was very clear that in places where people felt that their supervisor was approachable, they could have these conversations. It was a better environment and these harms ended up getting magnified a lot less.”
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