Completed Pregnancy, Children & Inherited Conditions Public Health & Healthcare

In Their Own Voices: Vulnerabilities & Abilities of Women, Children, & Families in Health Research

In plain English

AI plain-English summary

Pregnant women, new mothers, and children in low-income countries are routinely excluded from health research because ethics guidelines label them "vulnerable"—yet this blanket protection may be blocking them from studies that could save their lives. The problem is a gap in knowledge. Current ethics frameworks treat vulnerability as a fixed trait, but the researchers argue it is context-dependent: a woman in rural Kenya may be vulnerable to coercion in one setting but perfectly capable of informed consent in another. The team will interview women, children, and families in Kenya, South Africa, and Thailand to understand how they themselves perceive their own vulnerabilities and abilities, and what social support structures help them participate safely in research. If this succeeds, it could reshape how ethics committees worldwide assess vulnerability—moving from blanket exclusion to context-sensitive inclusion. The immediate impact is on research practice, not everyday life. But the downstream effect is concrete: more women and children enrolled in clinical trials for vaccines, treatments, and delivery innovations that directly address the diseases killing them. The study is applied ethics research, not fundamental science, and its value lies in making existing health research more inclusive and more effective.

View original technical description
Efforts surrounding the Millennium Development and Sustainable Development Goals have brought much needed attention to lessening the burden of disease shouldered by women and children, which is most severe in low-income countries. Lasting advances in women’s and children’s health will require improvement of health systems, environment, education, improved access to effective health interventions, including better ways to deliver care in rural, low-income settings. Innovations in each of these areas will require clinical, social science and implementation research. However, many of these women and children are considered to be vulnerable to harms, coercion or exploitation, making inclusion in even potentially beneficial research ethically concerning. While significant strides have been made to develop research ethics guidance for those working with vulnerable populations, critical gaps remain in our understanding of specific vulnerabilities in context, accompanying abilities, the role of social support in mitigating vulnerability, and individuals’ own perceptions of vulnerabilities and abilities. To address these gaps and to improve support and guidance for responsible research with women, children and families, we propose an interdisciplinary collaborative study with investigators in maternal-child health, infectious disease, and social science research across three international sites in the Wellcome Trust Major Overseas Programmes: Kenya, South Africa and Thailand.

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Researchers

Maureen Kelley (EPMC Awardee)

Related Research

Grants with similar aims, by meaning.

Bridging the Gap: Examining Disability and Development in Four African Countries
Improved Measures of the Family Environment in Longitudinal Population Studies of Child Health in Sub-Saharan Africa
Leaving no-one behind in Research
Have We Become Too Ethical? Managing vulnerability in social science research on health.
NIHR Global Health Research Group on Violence Against Women and Violence Against Children: University of Birmingham/University of Cape Town in partnership with the Lancet Commission

Original classification

Collaborative Award in H&SS

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