Duke researchers and leaders joined the Duke Office of Scientific Integrity for a virtual town hall where they presented from their experience about how to make sure that the principle of conducting research that serves society responsibly is well served. About 400 researchers attended this event which was hosted during the 2022 Research Week at Duke.
What does social responsibility truly mean in the context of academic research? In short, it means that society overall finds it beneficial, credible, and worthwhile; that it is rigorous and trustworthy; that from design to data analysis to dissemination it is conducted with integrity; lastly, it means that research is relevant and it meets the needs of the people, especially those of vulnerable and marginalized communities. There are many ethical struggles that researchers may need to navigate. Some may need to consider the boundaries between social responsibility, social interest, and advocacy. Or to know what to do when research can be “weaponized” if it falls into the wrong hands. Others may need to navigate political interests that could impact the integrity of their academic work.
“Nothing about us without us” was the motto that guided Donna Biederman’s presentation. Donna Biederman, DrPH, RN, Associate Clinical Professor in the School of Nursing, conducts homelessness research and one of her credos is that in order to serve society, research needs to be participatory and patient-centered. She presented, as an example, a report of the National Institute for Medical Respit Care, where patient-centered research is defined by “working with a community, changing the balance of power, involving a different role for the researcher, and active participation of the community at all stages of the research process”. The report also mentions challenges to participatory research, including discrimination, trauma, health problems, illiteracy, and lack of access to technology. But if researchers manage to overcome the challenges, the benefits would also be invaluable – more relevant and thus beneficial research outcomes. On a similar topic, Sabrena Mervin-Blake, Staff Director at the Clinical and Translational Science Institute, emphasized the importance of thinking social responsibility of researchers beyond checking boxes and compliance, but in the context of the fundamental mission of clinical research – to reflect the needs, interested and priorities of communities of interest. Seen from this angle, socially responsible research include underrepresented populations, identifies strategies or treatments that are uniquely effective for specific populations and translates research outcomes more quickly into innovation to improve health. Socially responsible researchers know to listen to communities that are the beneficiaries of their work without patronizing them.
Deondra Rose, PhD, Associate Professor of Public Policy, Political Science, and History at the Sanford School of Public Policy and Director of the Duke Center for Politics - POLIS, focuses her research on how higher education programs served historically marginalized communities in the US – particularly women and black Americans – and how it shaped the political landscape. “I am also focused on how higher education policies created inclusive democracy and how, by promoting greater college degree attainment among women and black Americans, these policies promoted political engagement”, Rose said. She added that her research also shows that politics tends to underscore the importance of policies that could lead to transformative social change. “I found in my work that policy design is extremely significant if law makers seek to expand equal opportunity through social policy. I particularly found a very powerful combination when redistribution is complemented by regulatory policy”, Rose said. She added that the work with students through the Duke Sanford Policy Lab, resulted in important research that helped policy makers in adopting programs that could shape the social environment.
Thavolia Glymph, PhD, Peabody Family Distinguished Professor of History and Professor of Law at the Trinity College, shared a commentary about ethical and scientific dilemmas while archiving southern history. While researching a still unfinished book on refugee camps in the American Civil War, she came across a prayer published in a newspaper in 1863 titled “A Father’s Prayer,” in which an African American father lamented the loss of black children to the violence of the war. She discussed how this article changed how she read archival materials and saw her project and the struggle scholars confront when facing archives replete with violence while trying to adhere to disciplinary training in objectivity. She explained how the prayer helped her write a different kind of history of the Civil War and a humanitarian crisis in which the victims were black people. The question before her, she stated, was not how to write scientifically but why telling the story of this humanitarian crisis sounded to so some audiences like advocacy. Why was the struggle of enslaved people for freedom viewed so differently from other epic battles for human rights? Her work aims in part to place this history in the larger history of human rights struggles.
Grant Murray, PhD, Associate Professor of Marine Policy, conducts research specifically about how societies (and particularly indigenous and adjacent communities) understand, value, and interact with the non-human world around them. His work involves sometimes more than a decade long engagement. Considering community values, and their understanding of their environmental changes are key, he said. “I take a problem orientation and an ethnographic approach, often associated with environmental change”, Murray said, emphasizing the need for humility and respect that researchers need to manifest in the process of community research: “If community does not understand that the research that is conducted is fair and just, then the information that was presented is of poor quality. I take a lot of time with my students to reflect of who we are and where we are coming from: what are our biases that can be present in the process of our research and how to manage our own values and biases. Sometimes what I am interested in and what community is interested in do not align. And this is OK. The best next step in this situation is to step away from that enterprise”.
Christina Gibson-Davis, PhD, Professor in the Sanford School of Public Policy, shared with the audience “a study that went spectacularly wrong” as an example for her talk about how to identify and prevent fraud in survey research. The study was trying to assess families’ experiences with COVID: “We took multiple steps to prevent fraud, but in the end, 75-85% of our respondents were invalid”, Gibson-Davis said. And this happened because of manual and automatic fraud (see slides for examples). From this experience, Dr. Gibson-David learned some lessons that could help researchers in survey research; these are shared below:
- Paying participants is risky! If possible, think through other incentives
- If possible, use individualized links and an existing sample
- Verifying through follow-ups, documentation, etc. can be very helpful
- Keep in mind that fraudsters are extremely sophisticated
Susanna Naggie, MD, MHS, Vice Dean for Clinical Research at the Duke University School of Medicine, focused her talk on the risks of conducting socially responsible science when science is politicized. She described her experience with two clinical trials during the COVID pandemic. First was the HERO-HCQ randomized clinical trial testing if hydroxychloroquine (HCQ, brand name Plaquenil®, approved by the U.S. Food and Drug Administration to treat malaria, rheumatoid arthritis and lupus) can prevent COVID-19 infection in healthcare workers. “When politicians weight in about the efficacy of the drug before being tested, this may result in high negative impact on the human subjects recruitment. Because of that, the number of trials on HCQ had to close because of lack of enrollment and, as result, a large number of people globally are still receiving this drug”, Susanna Naggie said. The second clinical trial was funded by the NIH to assess the efficacy of a veterinary drug, Ivermectin, in treating COVID 19 in outpatient settings. “Despite the fact that data showed that this drug is ineffective, the number of prescriptions in the US and globally is quite impressive. Many licensed physicians actually strongly believe that this drug works. We had significant instances of poisonings, but we still have many people who think this drug is safe and effective in treating COVID 19”, Naggie ended.