Gender Increasingly Factored Into Health Research, But More Is Needed 
Ajoke Sobanjo-ter Meulen, Princess Nothemba (Nono) Simelela, Wiweka Kaszubska, Alwyn Mwinga, Jamie Nishi, Andrew Tuttle, Lisa Goërlitz (from top left to right)

Although gender is increasingly factored into health research, much remains to be done, experts reported at a Tuesday event co-organised by the Geneva Graduate Institute’s Global Health Centre.

But despite growing awareness, health research continues to conceptualize gender in binary terms. Very little research concerns those who identify as LGBTQ+, according to speakers at the event, which was co-sponsored by the Medicines for Malaria Venture, the Global Health Technologies Coalition, Deutsche Stiftung Weltbevölkerung (DSW International), and the International Geneva Global Health Platform. 

Panellists explained how diseases can have vastly different impacts on different genders because of social and economic factors. Women are under-represented in pre-clinical and clinical trial research, leading to limited data on risks and benefits of tested medicines and vaccines. Later impacts of this bias eventually may limit women’s therapeutic options.

Pregnant women are an especially vulnerable category, often left out of clinical trials altogether.  

Involve Communities, Improve Trust

Alwyn Mwinga, CEO, Zambart Project; Zambia DNDi Board Patient Representative said the key to involving more women in research is to improve trust.

Panellists repeatedly stressed the need to work closely with communities while designing solutions, as currently researchers have inadequate consultations with women.

“This element of trust actually underscores the importance of important community research, and this is more impactful,” said Alwyn Mwinga, Zambart Project CEO and Zambia DNDi Board Patient Representative.

She said the take-home message is that pregnant women are willing to participate in research, provided they are given sufficient information to make a considered decision. She added that while more women are included in recent clinical trials, a lot more needs to be done.  

Among the barriers to including more women in clinical trials were onerous paperwork involved in the consent process and cultural issues surrounding consent: if women must refer such decisions to a spouse or parents, this calls into question the process of informed consent. 

Neglected Diseases and Skewed Funding

Bias isn’t limited to gender issues — inequities also mark funding for research into various diseases. Some diseases get more funding than others, and those that concern women the most may be neglected.  

“In 2018 we saw $US 1.7 billion invested across these health issues … and, maybe unsurprisingly, the lion’s share of that — nearly 85% — went to HIV/AIDS,” said Andrew Tuttle, Policy Cures Research research director. Research is lacking about pregnancy-related conditions, and this slows development of drugs and technologies for pregnancy-related conditions.

Poverty-related neglected diseases are another neglected area. “The same disease might have different consequences on different genders or different sexes because of the role of women and girls in society or because of expectations towards different gender roles and so on,” said Lisa Goërlitz, DSW Brussels Office EU Advocacy Unit head.

She said there is almost no data on how these diseases affect LGBTQ+ community members.

Gender dimensions have significant impact on health outcomes depending on stigma and discrimination, as well as different financial and social outcomes.

Ajoke Sobanjo-ter Meulen, lead of Maternal Immunisation, Bill & Melinda Gates Foundation said that maternal immunisation can serve as an example for other health programmes

While stakeholders like manufacturers, policy-makers and communities can make a difference, women have made direct efforts to be included in research.
“Women’s autonomy and agency — I think that played a very important role. The Zika example and Ebola example are very critical here, because in both instances pregnant women demanded to be included in clinical trials, which initially did not happen,” said Ajoke Sobanjo-ter Meulen, maternal immunisation lead at the Bill & Melinda Gates Foundation.

Thanks to these milestones, subsequent outbreaks have seen pregnant women included in earlier stages of research.

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