With the Martin Delaney presentation at this year's Conference on Retroviruses and Opportunistic Infections (CROI) focused on women in research, moderator Sharon L. Hillier, Ph.D., of the University of Pittsburgh said in her opening remarks: "The best kind of science is not about publications, it's about people." The people affected by HIV include women, panelists pointed out, noting that women are often underrepresented among those who design the clinical trials and conduct the research, as well as among those who are being studied -- trial participants. The three presentations highlighted this lack of inclusion, offered ideas on how to remedy the situation, and showed how one woman moved from advocate to researcher.
Monica Gandhi, M.D., M.P.H., of the University of California, San Francisco, called unconscious bias the "greatest barrier to achieving gender equity in STEM [Science, Technology, Engineering and Mathematics]." If we are to overcome this imbalance in academia, the implicit bias must be made explicit, she added. Doing so not only advances researchers, but also helps study participants. Women are underrepresented in HIV clinical trials -- for example, only 8.3% of participants in HIV cure studies are women. However, when women are included during the design of trials, such as during the GRACE study, more women are enrolled, Gandhi noted. While 57% of instructors at medical schools are women, only 16% of deans are women. With so few women in the top tiers of academia, female role models are scarce. Thus, mentoring becomes even more important to help young researchers move up the ranks. Every junior investigator should have not only a research mentor to help her submit papers and with other academic pursuits, but also an external career mentor, Gandhi advised. That person should provide a safe space for discussion of problems that arise, including those with the research mentor as well as work-life balance issues. She recommended that such a mentoring relationship be formalized, with regularly scheduled sessions, an agenda and action plan.
At the age of 48, Tonia Poteat, Ph.D., M.P.H., of Johns Hopkins University is a junior researcher, despite being one of the foremost researchers in issues regarding HIV and trans communities. She started out as an HIV activist in the 1980s, volunteering at an HIV organization as she learned about the intersection of social justice and HIV. There she was inspired by the woman who led the project at the time. Poteat became a physician's assistant, then earned a degree in public health. While providing services to transgender women at an Atlanta infectious disease clinic she met co-workers from the Centers for Diseases Control and Prevention. They, and her dual role at the clinic and as a monitor of PEPFAR [President's Emergency Plan for AIDS Relief] programs in sub-Saharan Africa, inspired her to return to school. She now holds a Ph.D. in international public health. In her view, HIV is "a social disease, as well as a biomedical and clinical disease." Social science therefore must be integrated with clinical science, Poteat advocated.
Related: Communities Affected by HIV Must Have a Voice in Clinical Research
Including behavioral and social science aspects in clinical trial design is also important to Dázon Dixon Diallo, M.P.H., DHL, of SisterLove, Inc. HIV research activists need to "protect, preserve and restore the dignity of those living with the disease," she said. One successful campaign to this end was "Women don't get AIDS -- we just die from it" in the 1990s. The CDC subsequently adopted a more inclusive definition of the disease, which allowed women to access resources hitherto reserved for men. Diallo emphasized four aspects: researchers must be from and close to the community being studied; activists must change the narrative so that the paucity of women in a trial becomes the exception that is questioned; all must push beyond their comfort zones; and hope must be protected by translating recent science back to the community, spreading the "U=U" [undetectable = untransmittable] message.
The community should also be consulted when trials are designed, an audience member noted. "Who told them these are our problems?" is often the response to researchers investigating an issue that a community does not care about, he said. A suggestion for getting more women into clinical trials came from another audience member: Cap the number of men that can participate in a given study to ensure greater efforts are made to recruit female participants. In the final analysis, research is for the benefit of people, and they need to be represented at all stages of that research. "We need the people at the table to reflect who needs the intervention," Dr. Hillier concluded.