Ojong, S. A., Temmerman, M., Khosla, R. & Bustreo, F. Women’s health and rights in the twenty-first century. Nat. Med. 30, 1547–1555 (2024).
Liu, K. A. & Dipietro Mager, N. A. Women’s involvement in clinical trials: historical perspective and future implications. Pharm. Pract. 14, 708 (2016).
Legato, M. Principles of Gender-Specific Medicine: Gender in the Genomic Era (Academic Press, 2017).
Chapron, C., Marcellin, L., Borghese, B. & Santulli, P. Rethinking mechanisms, diagnosis and management of endometriosis. Nat. Rev. Endocrinol. 15, 666–682 (2019).
Agarwal, S. K. et al. Clinical diagnosis of endometriosis: a call to action. Am. J. Obstet. Gynecol. 220, 354.e1–354.e12 (2019).
Al Wattar, B. H. et al. Harmonizing research outcomes for polycystic ovary syndrome (HARP), a marathon not a sprint: current challenges and future research need. Hum. Reprod. 36, 523–528 (2021).
Dubol, M., Epperson, C. N., Lanzenberger, R., Sundström-Poromaa, I. & Comasco, E. Neuroimaging premenstrual dysphoric disorder: a systematic and critical review. Front. Neuroendocrinol. 57, 100838 (2020).
McEvoy, M., McElvaney, R. & Glover, R. Understanding vaginismus: a biopsychosocial perspective. Sex. Relatsh. Ther. 39, 680–701 (2021).
Department of Health & Social Care. Our Vision for the Women’s Health Strategy for England assets.publishing.service.gov.uk/media/61c1b579e90e07196a66be15/dhsc-our-vision-for-the-women_s-health-strategy-for-england.pdf (2021).
Stafford-Smith, M. et al. Integration: the key to implementing the Sustainable Development Goals. Sustain. Sci. 12, 911–919 (2017).
Serrano, M. G. et al. Racioethnic diversity in the dynamics of the vaginal microbiome during pregnancy. Nat. Med. 25, 1001–1011 (2019).
Oftedal, A. M., Busterud, K., Irgens, L. M., Haug, K. & Rasmussen, S. Socio-economic risk factors for preterm birth in Norway 1999–2009. Scand. J. Public Health 44, 587–592 (2016).
Virtanen, S. et al. Vaginal microbiota composition correlates between pap smear microscopy and next generation sequencing and associates to socioeconomic status. Sci. Rep. 9, 7750 (2019).
Dabee, S., Passmore, J.-A. S., Heffron, R. & Jaspan, H. B. The complex link between the female genital microbiota, genital infections, and inflammation. Infect. Immun. 89, e00487-20 (2021).
Haklay, M. Citizen science and volunteered geographic information: overview and typology of participation. In Crowdsourcing Geographic Knowledge 105–122 (2012).
Kimura, A. H. & Kinchy, A. Citizen science: probing the virtues and contexts of participatory research. Engag. Sci. Technol. Soc. 2, 331–361 (2016).
Fiske, A., Prainsack, B. & Buyx, A. Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine. J. Med. Ethics 45, 617–622 (2019).
Schwartz-Marín, E., Wade, P., Cruz-Santiago, A. & Cárdenas, R. Colombian forensic genetics as a form of public science: the role of race, nation and common sense in the stabilization of DNA populations. Soc. Stud. Sci. 45, 862–885 (2015).
Ottinger, G. Citizen science. In the Routledge Encyclopedia of Citizen Media 6 (Routledge, 2020).
Hager, E. et al. A model for engaging citizen scientists: a community-partnered research collaboration to address inequities for Black birthing people. Matern. Child Health J. 28, 1495–1505 (2024).
Irwin, A. Citizen science comes of ages. Efforts to engage the public in research are bigger and more diverse than ever. But how much more room is there to grow? Nature 562, 480–482 (2018).
A life-course approach to women’s health. Nat. Med. 30, 1 (2024).
Lebeer, S. et al. A citizen-science-enabled catalogue of the vaginal microbiome and associated factors. Nat. Microbiol. 8, 2183–2195 (2023).
David, M. Albert and Gustav Döderlein — a critical view to the biographies of two German professors. Zentralbl. Gynakol. 128, 56–59 (2006).
Wyklicky, H. & Skopec, M. Ignaz Philipp Semmelweis, prophet of bacteriology. Infect. Control 4, 367–370 (1983).
Khabele, D., Holcomb, K., Connors, N. K. & Bradley, L. A perspective on James Marion Sims, MD, and antiblack racism in obstetrics and gynecology. J. Minim. Invasive Gynecol. 28, 153–155 (2021).
Christmas, M. #SayHerName: should obstetrics and gynecology reckon with the legacy of JM Sims? Reprod. Sci. 28, 3282–3284 (2021).
Spettel, S. & White, M. D. The portrayal of J. Marion Sims’ controversial surgical legacy. J. Urol. 185, 2424–2427 (2011).
Gutiérrez, E. R. Fertile Matters: the Politics of Mexican-Origin Women’s Reproduction (University of Texas Press, 2008).
López, I. Matters of Choice: Puerto Rican Women’s Struggle for Reproductive Freedom (Rutgers University Press, 2008).
Stephenson, H. & Zeldes, K. Write a chapter and change the world: how the Boston Women’s Health Book Collective transformed women’s health then—and now. Am. J. Public Health 98, 1741–1746 (2008).
Boston Women’s Health Collective. Women and Their Bodies (New England Free Press, 1970).
Gijsel, L., Huyse, T. & Van Hoyweghen, I. Citizen Science: Hoe Burgers de Wetenschap Uitdagen (Pelckmans Pro, 2019).
Bonney, R. et al. Citizen science: a developing tool for expanding science knowledge and scientific literacy. Bioscience 59, 977–984 (2009).
Fritz, S. et al. Geo-wiki.org: the use of crowdsourcing to improve global land cover. Remote Sens. 1, 345–354 (2009).
Van Brussel, S. & Huyse, H. Citizen science on speed? Realising the triple objective of scientific rigour, policy influence and deep citizen engagement in a large-scale citizen science project on ambient air quality in Antwerp. J. Environ. Plan. Manag. 62, 534–551 (2019).
Kenens, J., Van Oudheusden, M., Yoshizawa, G. & Van Hoyweghen, I. Science by, with and for citizens: rethinking ‘citizen science’ after the 2011 Fukushima disaster. Palgrave Commun. 6, 1–8 (2020).
Strasser, B. J., Baudry, J., Mahr, D., Sanchez, G. & Tancoigne, E. Rethinking science and public participation. EPFL Sci. Publ. 32, 52–76 (2019).
van Oudheusden, M., Suman, A. B., Huyse, T., Huyse, H. & Medvecky, F. The valuable plurality of the citizen sciences. Sci. Technol. Stud. 13, 10–20 (2024).
Piña-Romero, J. Citizen science ‘from the margins’: epistemologies of ignorance in the Movement of Women with Endometriosis in Mexico. Tapuya Lat. Am. Sci. Technol. Soc. https://doi.org/10.1080/25729861.2023.2247834 (2023).
del Savio, L., Prainsack, B. & Buyx, A. Crowdsourcing the human gut. Is crowdsourcing also ‘citizen science’? J. Sci. Commun. 15, A03 (2016).
Savio, L. Del, Prainsack, B. & Buyx, A. Motivations of participants in the citizen science of microbiomics: data from the British Gut Project. Genet. Med. 19, 959–961 (2017).
McDonald, D. et al. American Gut: an open platform for citizen science microbiome research. mSystems 3, e00031-18 (2018).
Falony, G. et al. Population-level analysis of gut microbiome variation. Science 352, 560–564 (2016).
Willis, J. R. et al. Citizen science charts two major ‘stomatotypes’ in the oral microbiome of adolescents and reveals links with habits and drinking water composition. Microbiome 6, 218 (2018).
Lebeer, S. T. et al. A citizen-science-enabled catalogue of the vaginal microbiome and associated factors. Nat. Microbiol. 8, 2183–2195 (2023).
Stunkel, L. & Grady, C. More than the money: a review of the literature examining healthy volunteer motivations. Contemp. Clin. Trials 32, 342–352 (2011).
McCann, S. K., Campbell, M. K. & Entwistle, V. A. Reasons for participating in randomised controlled trials: conditional altruism and considerations for self. Trials 11, 31 (2010).
Haklay, M. M. et al. What is citizen science? The challenges of definition. In the Science of Citizen Science 13–33 (Springer, 2021).
Fraisl, D. et al. Mapping citizen science contributions to the UN Sustainable Development Goals. Sustain. Sci. 15, 1735–1751 (2020).
Irwin, A. Citizen science and scientific citizenship: same words, different meanings? In Science Communication Today — Current Strategies and Means of Action (eds Schiele, B. et al.) (Presses Universitaires de Nancy, 2015).
Kimura, A. & Kinchy, A. Science by the People: Participation, Power and the Politics of Environmental Knowledge (Rutgers University Press, 2019).
Füchslin, T., Schäfer, M. S. & Metag, J. Who wants to be a citizen scientist? Identifying the potential of citizen science and target segments in Switzerland. Public Underst. Sci. 28, 652–668 (2019).
Bonney, R., Phillips, T. B., Ballard, H. L. & Enck, J. W. Can citizen science enhance public understanding of science? Public Underst. Sci. 25, 2–16 (2016).
Curtis, V. Online Citizen Science and the Widening of Academia: Distributed Engagement with Research and Knowledge Production (Palgrave Macmillan, 2018).
Paleco, C., Peter, S. G., Seoane, N. S., Kaufmann, J. & Argyri, P. Inclusiveness and diversity in citizen science. In the Science of Citizen Science 261–281 (Springer Nature, 2021).
Aicardi, C. et al. Could DTC genome testing exacerbate research inequities? The Hastings Center — Clinical Trials & Research Ethics www.thehastingscenter.org/response-to-call-for-essays-could-dtc-genome-testing-exacerbate-research-inequities/ (2016).
Edwards, R. et al. Learning and developing science capital through citizen science. In Citizen Science: Innovation in Open Science, Society and Policy 381–390 (UCL Press, 2018).
Allali, I. et al. Human microbiota research in Africa: a systematic review reveals gaps and priorities for future research. Microbiome 10, 241 (2022).
Ortega, R. P. Microbiome data dominated by wealthy countries. Science 375, 709 (2022).
Murphy, M. Seizing the Means of Reproduction: Entanglements of Feminism, Health, and Technoscience (Duke University Press, 2012).
Wallerstein, N. & Duran, B. Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am. J. Public Health 100, 40–46 (2010).
Flores, C. & Bagwell, J. Social justice leadership as inclusion: promoting inclusive practices to ensure equity for all. Educ. Leadersh. Adm. Teach. Program Dev. 31–43 (2021).
Tang, K. & Estrada-Reveles, U. A collective approach to building an equitable and inclusive system that meets the needs of marginalized populations in education. Educ. Leadersh. Adm. Teach. Program Dev. 44–56 (2021).
Kapoor, A. & McKinnon, M. The elephant in the room: tackling taboos in women’s healthcare. J. Sci. Commun. 20, C1 (2021).
Sundstrom, B. Breaking women’s health taboos: integrating diffusion of innovations theory with social marketing. Soc. Mar. Q. 20, 87–102 (2014).
Kulczycki, A. A comparative study of abortion policymaking in Brazil and South America: the salience of issue networks and policy windows. J. Comp. Policy Anal. Res. Pract. 16, 62–78 (2014).
Wehn, U. et al. Impact assessment of citizen science: state of the art and guiding principles for a consolidated approach. Sustain. Sci. 16, 1683–1699 (2021).
Ahannach, S. et al. Microbial enrichment and storage for metagenomics of vaginal, skin, and saliva samples. iScience 24, 103306 (2021).
Crain, R., Cooper, C. & Dickinson, J. L. Citizen science: a tool for integrating studies of human and natural systems. Annu. Rev. Environ. Resour. 39, 641–665 (2014).
Burns, T. W., O’Connor, D. J. & Stocklmayer, S. M. Science communication: a contemporary definition. Public Underst. Sci. 12, 183–202 (2003).
Loomba, S., de Figueiredo, A., Piatek, S. J., de Graaf, K. & Larson, H. J. Measuring the impact of COVID-19 vaccine misinformation on vaccination intent in the UK and USA. Nat. Hum. Behav. 5, 960 (2021).
Goldberg, M. H., Gustafson, A., Rosenthal, S. A. & Leiserowitz, A. Shifting Republican views on climate change through targeted advertising. Nat. Clim. Change 11, 573–577 (2021).
Weingart, P. & Guenther, L. Science communication and the issue of trust. J. Sci. Commun. 15, C01 (2016).
National Academies of Sciences Engineering and Medicine. Open Science by Design: Realizing a Vision for 21st Century Research (National Academies Press, 2018).
Grand, A., Wilkinson, C., Bultitude, K. & Winfield, A. F. T. Open science: a new ‘trust technology’? Sci. Commun. 34, 679–689 (2012).
Bromme, R., Mede, N. G., Thomm, E., Kremer, B. & Ziegler, R. An anchor in troubled times: trust in science before and within the COVID-19 pandemic. PLoS ONE 17, e0262823 (2022).
Kreps, S. E. & Kriner, D. L. Model uncertainty, political contestation, and public trust in science: evidence from the COVID-19 pandemic. Sci. Adv. 6, eabd4563 (2020).
Ahannach, S. et al. Microbial enrichment and storage for metagenomics of vaginal, skin and saliva samples. iScience 24, 103306 (2021).
Haguenoer, K. et al. Vaginal self-sampling is a cost-effective way to increase participation in a cervical cancer screening programme: a randomised trial. Br. J. Cancer 111, 2187–2196 (2014).
Karwalajtys, T., Howard, M., Sellors, J. W. & Kaczorowski, J. Vaginal self sampling versus physician cervical sampling for HPV among younger and older women. Sex. Transm. Infect. 82, 337–339 (2006).
Barnard, S. et al. Comparing the characteristics of users of an online service for STI self-sampling with clinic service users: a cross-sectional analysis. Sex. Transm. Infect. 94, 377–383 (2018).
Camus, C. et al. Acceptability and efficacy of vaginal self-sampling for genital infection and bacterial vaginosis: a cross-sectional study. PLoS ONE 16, e0260021 (2021).
Morgan, K., Azzani, M., Khaing, S. L., Wong, Y.-L. & Su, T. T. Acceptability of women self-sampling versus clinician-collected samples for HPV DNA testing: a systematic review. J. Low. Genit. Tract Dis. 23, 193–199 (2019).
Jean-Christophe Lagier, N. D., Fenollar, F., Tamalet, C., Sokhna, C. & Raoult, D. Vaginal self-sampling as a diagnosis tool in low-income countries and potential applications for exploring the infectious causes of miscarriage. Future Microbiol. 12, 609–620 (2017).
Costa, T., Bateson, D. & Woo, Y. L. Enhancing equity in cervical screening — initiatives to increase screening participation. Curr. Opin. Obstet. Gynecol. 36, 345–352 (2024).
Tiro, J. A. et al. Understanding patients’ perspectives and information needs following a positive home human papillomavirus self-sampling kit result. J. Womens Health 28, 384–392 (2019).
Vega-Crespo, B. et al. Barriers and advantages of self-sampling tests, for HPV diagnosis: a qualitative field experience before implementation in a rural community in Ecuador. Int. J. Womens Health 16, 947–960 (2024).
Viviano, M. et al. Self-sampling to improve cervical cancer screening coverage in Switzerland: a randomised controlled trial. Br. J. Cancer 116, 1382–1388 (2017).
Myria Federaal Migratiecentrum. Migratie in Cijfers en in Rechten 2018 11 https://www.myria.be/nl/publicaties/migratie-in-cijfers-en-in-rechten-2018 (2020).
Van Dyck, L. Samen met Isala naar een inclusievere wetenschapswereld. Isala isala.be/samen-met-isala-naar-een-inclusievere-wetenschapswereld/ (2021).
Vohland, K. et al. Editorial: the science of citizen science evolves. In The Science of Citizen Science 1–12 (Springer, 2021).
Haklay, M. et al. Contours of citizen science: a vignette study. R. Soc. Open Sci. 8, 202108 (2021).
Kullenberg, C. & Kasperowski, D. What is citizen science? — A scientometric meta-analysis. PLoS ONE 11, e0147152 (2016).
Irwin, A. Citizen Science: A Study of People, Expertise and Sustainable Development https://doi.org/10.4324/9780203202395 (1995).
Bonney, R. et al. Public Participation in Scientific Research: Defining the Field and Assessing its Potential for Informal Science Education. A CAISE Inquiry Group Report (CAISE, 2009).
Groves, C. Remaking participation: science, environment and emergent publics. Sci. Cult. 26, 408–412 (2017).
Kasperowski, D. & Kullenberg, C. The many modes of citizen science. Sci. Technol. Stud. 32, 2–7 (2019).
Shirk, J. L. et al. Public participation in scientific research: a framework for deliberate design. Ecol. Soc. 17, 29 (2012).
Wiggins, A. & Crowston, K. From conservation to crowdsourcing: a typology of citizen science. In Proc. Annual Hawaii International Conference on System Science 1–10 (2011).
Arnstein, S. R. A ladder of citizen participation. J. Am. Plan. Assoc. 35, 216–224 (1969).
Glimmerveen, L., Ybema, S. & Nies, H. Who participates in public participation? The exclusionary effects of inclusionary efforts. Adm. Soc. 54, 543–574 (2022).
Engel, N., Van Hoyweghen, I. & Krumeich, A. Making Global Health Care Innovation Work: Standardization and Localization (Palgrave Macmillan, 2014).
Ahannach, S. et al. Microbial and seminal traces of sexual intercourse and forensic implications. Preprint at Research Square https://doi.org/10.21203/rs.3.rs-4302243/v1 (2024).