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The Rise of Citizen Science in Health and Biomedical Research

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Silvia Garcia, Sheyla Ordoñez, Victor Manuel López-Molina, Blanca Lacruz-Pleguezuelos, Enrique Carrillo de Santa Pau & Laura Judith Marcos-Zambrano. (2023) Citizen science helps to raise awareness about gut microbiome health in people at risk of developing non-communicable diseases. Gut Microbes 15:1.
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Chiara Franzoni, Marion Poetz & Henry Sauermann. (2022) Crowds, citizens, and science: a multi-dimensional framework and agenda for future research. Industry and Innovation 29:2, pages 251-284.
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Anat Gesser-Edelsburg. (2021) How to Make Health and Risk Communication on Social Media More “Social” During COVID-19. Risk Management and Healthcare Policy 14, pages 3523-3540.
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Meredith Trejo, Isabel Canfield, Jill O. Robinson & Christi J. Guerrini. (2021) How Biomedical Citizen Scientists Define What They Do: It’s All in the Name. AJOB Empirical Bioethics 12:1, pages 63-70.
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Stephanie Chesser, Michelle M. Porter & Anthony G. Tuckett. (2020) Cultivating citizen science for all: ethical considerations for research projects involving diverse and marginalized populations. International Journal of Social Research Methodology 23:5, pages 497-508.
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Bray Patrick-Lake & Jennifer C. Goldsack. (2019) Mind the Gap: The Ethics Void Created by the Rise of Citizen Science in Health and Biomedical Research. The American Journal of Bioethics 19:8, pages 1-2.
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Christi J. Guerrini, Anna Wexler, Patricia J. Zettler & Amy L. McGuire. (2019) Biomedical Citizen Science or Something Else? Reflections on Terms and Definitions. The American Journal of Bioethics 19:8, pages 17-19.
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Lisa M. Rasmussen. (2019) Beyond Belmont—and Beyond Regulations. The American Journal of Bioethics 19:8, pages 19-21.
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Barbara J. Evans. (2019) Parsing the Line Between Professional and Citizen Science. The American Journal of Bioethics 19:8, pages 15-17.
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Lucie White. (2019) A Neglected Ethical Issue in Citizen Science and DIY Biology. The American Journal of Bioethics 19:8, pages 46-48.
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Cristian Timmermann. (2019) Citizen Science for Biomedical Research and Contributive Justice. The American Journal of Bioethics 19:8, pages 60-62.
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Victoria J. Metcalf & Rochelle L. Style. (2019) Cultural Considerations in Citizen Health Science and the Case for Community-Based Approaches. The American Journal of Bioethics 19:8, pages 40-43.
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Maya Sherman, Ziv Idan & Dov Greenbaum. (2019) Who Watches the Step-Watchers: The Ups and Downs of Turning Anecdotal Citizen Science into Actionable Clinical Data. The American Journal of Bioethics 19:8, pages 44-46.
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Markus Labude & Vicki Xafis. (2019) Ethically Justified Restrictions on Citizen Science: A Perspective from Singapore. The American Journal of Bioethics 19:8, pages 38-40.
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Hina Walajahi. (2019) Engaging the “Citizen” in Citizen Science: Who’s Actually Included?. The American Journal of Bioethics 19:8, pages 31-33.
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Rachel A. Ankeny & Helen Barrie. (2019) Learning Not Just From But With Citizens: The Importance of Co-Design in Health-Related Social Research. The American Journal of Bioethics 19:8, pages 54-56.
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Eleanor T. Chung & Benjamin E. Berkman. (2019) Should Patient Groups Have the Power to Redirect How Their Samples Are Used?. The American Journal of Bioethics 19:8, pages 26-28.
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David B. Resnik. (2019) Institutional Review Board Oversight of Citizen Science Research Involving Human Subjects. The American Journal of Bioethics 19:8, pages 21-23.
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Jason David Keune. (2019) Considering Power Relations in Citizen Science. The American Journal of Bioethics 19:8, pages 48-49.
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Karsten Weber, Frank Pallas & Max-R. Ulbricht. (2019) Challenges of Citizen Science: Commons, Incentives, Organizations, and Regulations. The American Journal of Bioethics 19:8, pages 52-54.
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Mark S. Davis. (2019) The Importance of Gatekeeping in Citizen Science. The American Journal of Bioethics 19:8, pages 56-58.
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Bruno J. Strasser, Elise Tancoigne, Jérôme Baudry, Steven Piguet, Helen Spiers, José Luis-Fernandez Marquez, Jérôme Kasparian, François Grey, David Anderson & Chris Lintott. (2023) Quantifying online citizen science: Dynamics and demographics of public participation in science. PLOS ONE 18:11, pages e0293289.
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Syed Ghulam Sarwar Shah, Yolanda Barrado-Martín, Thomas Marjot, Jeremy W. Tomlinson & Vasiliki Kiparoglou. (2023) Adopting a Citizen Science Approach in Translational Experimental Medicine Research in Non-Alcoholic Fatty Liver Disease: A Study Protocol. Citizen Science: Theory and Practice 8:1.
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Jerel M. Ezell. (2023) The Health Disparities Research Industrial Complex. Social Science & Medicine, pages 116251.
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Heinz Krombholz. (2023) Motor development of first born compared to later born children in the first two years of life – A replication. Heliyon 9:10, pages e20372.
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Michael Clark & Michelle Cornes. (2023) Citizen Science as a Framework for Improving the Science-Society Interface in Long-Term Care Research. Journal of Long Term Care, pages 92-99.
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Julia F E van Calis, Kirsten E Bevelander, Anneke W C van der Cruijsen, Geraline L Leusink & Jenneken Naaldenberg. (2023) Toward Inclusive Approaches in the Design, Development, and Implementation of eHealth in the Intellectual Disability Sector: Scoping Review. Journal of Medical Internet Research 25, pages e45819.
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Joshua Aaron Miller, Libuše Hannah Vepřek, Sebastian Deterding & Seth Cooper. (2023) Practical recommendations from a multi-perspective needs and challenges assessment of citizen science games. PLOS ONE 18:5, pages e0285367.
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Tenny R Zhang. (2023) Ethics of ‘Counting Me In’: framing the implications of direct-to-patient genomics research. Journal of Medical Ethics, pages jme-2022-108741.
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Annemieke Wargers, Judit Queral, Famke JM Mölenberg, Lucia Tarro, Christopher M Elphick, Electra Kalogerakou, Alexandros Karagiannis, Elisabet Llauradó, Yannis Manios, Christina Mavrogianni, Claire Murray, Dimitris Vlachopoulos, Craig A Williams, Wilma Jansen & Rosa Solà. (2023) Citizen Science to improve healthy and active living among adolescents in four European countries: a protocol of the cluster randomised controlled trial of the Science Engagement to Empower aDolescentS (SEEDS) project. BMJ Open 13:5, pages e070169.
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Anna Wexler, Rebekah Choi, Alex Pearlman & Lisa M. Rasmussen. (2023) Navigating biosafety concerns within COVID-19 do-it-yourself (DIY) science: an ethnographic and interview study. BioSocieties.
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Isabelle Bonhoure, Anna Cigarini, Julián Vicens, Bàrbara Mitats & Josep Perelló. (2023) Reformulating computational social science with citizen social science: the case of a community-based mental health care research. Humanities and Social Sciences Communications 10:1.
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Lloyd S. Davis, Lei Zhu & Wiebke Finkler. (2023) Citizen Science: Is It Good Science?. Sustainability 15:5, pages 4577.
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Zerina Lokmic-Tomkins, Dinesh Bhandari, Chris Bain, Ann Borda, Timothy Charles Kariotis & David Reser. (2023) Lessons Learned from Natural Disasters around Digital Health Technologies and Delivering Quality Healthcare. International Journal of Environmental Research and Public Health 20:5, pages 4542.
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Daniel J. Gould, Marion Glanville-Hearst, Samantha Bunzli, Peter F. M. Choong & Michelle M. Dowsey. (2023) Research Buddy partnership in a MD–PhD program: lessons learned. Research Involvement and Engagement 9:1.
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Alexis Rulisa, Luuk van Kempen, Emmanuel Hakizimana & Constantianus J. M. Koenraadt. (2023) Local resource mobilization for malaria vector control among Rwandan rice farmers: a pilot study into the role of community ownership. Journal of Health, Population and Nutrition 42:1.
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Fernando Martínez-Martínez, David Roldán-Álvarez, Estefanía Martín & H Ulrich Hoppe. (2023) An analytics approach to health and healthcare in citizen science communications on Twitter. DIGITAL HEALTH 9, pages 205520762211453.
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Christi J. Guerrini, Joanna Kempner, Lisa M. Rasmussen & Anna Wexler. (2022) Diverse, Emergent, Disruptive: Perspectives on and Developments in Biomedical Citizen Science. Citizen Science: Theory and Practice 7:1.
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Anna Wexler. (2022) Mapping the Landscape of Do-it-Yourself Medicine. Citizen Science: Theory and Practice 7:1.
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Ellen Mintz & Jennifer Couch. (2022) Biomedical Citizen Science at the National Institutes of Health. Citizen Science: Theory and Practice 7:1.
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Christi J. Guerrini, Whitney Bash Brooks & Sheryl A. McCurdy. (2022) Pirate Talk: Navigating Practical, Ethical, and Legal Issues Associated with Biomedical Citizen Science Interview Studies. Citizen Science: Theory and Practice 7:1, pages 45.
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Nicole Foti. (2022) A “Tyranny of Structurelessness”? The Benefits and Burdens of Power Sharing and Governance Models in Citizen Science. Citizen Science: Theory and Practice 7:1.
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Barbara Groot & Tineke Abma. (2022) Ethics framework for citizen science and public and patient participation in research. BMC Medical Ethics 23:1.
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Maja Pedersen, Grace E. R. Wood, Praveena K. Fernes, Lisa Goldman Rosas, Ann Banchoff & Abby C. King. (2022) The “Our Voice” Method: Participatory Action Citizen Science Research to Advance Behavioral Health and Health Equity Outcomes. International Journal of Environmental Research and Public Health 19:22, pages 14773.
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Finn DanielsenHajo Eicken, Mikkel Funder, Noor Johnson, Olivia Lee, Ida Theilade, Dimitrios Argyriou & Neil D. Burgess. (2022) Community Monitoring of Natural Resource Systems and the Environment. Annual Review of Environment and Resources 47:1, pages 637-670.
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Patrik Baard & Per Sandin. (2022) Principlism and citizen science: the possibilities and limitations of principlism for guiding responsible citizen science conduct. Research Ethics 18:4, pages 304-318.
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Adele R Tufford, Christos Diou, Desiree A Lucassen, Ioannis Ioakimidis, Grace O'Malley, Leonidas Alagialoglou, Evangelia Charmandari, Gerardine Doyle, Konstantinos Filis, Penio Kassari, Tahar Kechadi, Vassilis Kilintzis, Esther Kok, Irini Lekka, Nicos Maglaveras, Ioannis Pagkalos, Vasileios Papapanagiotou, Ioannis Sarafis, Arsalan Shahid, Pieter van ’t Veer, Anastasios Delopoulos & Monica Mars. (2022) Toward Systems Models for Obesity Prevention: A Big Role for Big Data. Current Developments in Nutrition 6:9, pages 6013009.
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Lisa Lelie, Henk F. van der Molen, Mandy van den Berge, Sophie van der Feltz, Allard J. van der Beek, Carel T. J. Hulshof & Karin I. Proper. (2022) The process evaluation of a citizen science approach to design and implement workplace health promotion programs. BMC Public Health 22:1.
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Najmeh Khalili-Mahani, Sandra Woods, Eileen Mary Holowka, Amber Pahayahay & Mathieu Roy. (2022) Toward a digital citizen lab for capturing data about alternative ways of self-managing chronic pain: An attitudinal user study. Frontiers in Rehabilitation Sciences 3.
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S. Andrew Schroeder. (2022) Diversifying science: comparing the benefits of citizen science with the benefits of bringing more women into science. Synthese 200:4.
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Robin L Pierce. (2022) Interrupting pathways to health inequities in citizen science health research. Health Promotion International 37:Supplement_2, pages ii21-ii34.
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Rocco Palumbo, Mohammad Fakhar Manesh & Maddalena Sorrentino. (2022) Mapping the State of the Art to Envision the Future of Large-Scale Citizen Science Projects: An Interpretive Review. International Journal of Innovation and Technology Management 19:04.
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Christi J. Guerrini, Meredith Trejo, Isabel Canfield & Amy L. McGuire. (2020) Core values of genomic citizen science: results from a qualitative interview study. BioSocieties 17:2, pages 203-228.
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Jitka Stilund Hansen, Signe Gadegaard, Karsten Kryger Hansen, Asger Væring Larsen, Søren Møller, Gertrud Stougård Thomsen & Katrine Flindt Holmstrand. (2021) Research Data Management Challenges in Citizen Science Projects and Recommendations for Library Support Services. A Scoping Review and Case Study. Data Science Journal 20:1, pages 25.
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Bradford W Hesse, David E Conroy, Dominika Kwaśnicka, Molly E Waring, Eric Hekler, Sarah Andrus, Kenneth P Tercyak, Abby C King & Michael A Diefenbach. (2021) We’re all in this together: recommendations from the Society of Behavioral Medicine’s Open Science Working Group. Translational Behavioral Medicine 11:3, pages 693-698.
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