Citations (33)
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Rafaela Granja. (2021) Long-range familial searches in recreational DNA databases: expansion of affected populations, the participatory turn, and the co-production of biovalue. New Genetics and Society 40:3, pages 331-352.
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Aviad E. Raz, Emilia Niemiec, Heidi C. Howard, Sigrid Sterckx, Julian Cockbain & Barbara Prainsack. (2020) Transparency, consent and trust in the use of customers' data by an online genetic testing company: an Exploratory survey among 23andMe users. New Genetics and Society 39:4, pages 459-482.
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Karen Dam Nielsen & Marianne Boenink. (2020) Subtle voices, distant futures: a critical look at conditions for patient involvement in Alzheimer’s biomarker research and beyond. Journal of Responsible Innovation 7:2, pages 170-192.
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Christopher Kelty & Seth Erickson. (2018) Two modes of participation: A conceptual analysis of 102 cases of Internet and social media participation from 2005–2015. The Information Society 34:2, pages 71-87.
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Mariekie Burger. (2015) Public self-expression, identity and the participatory turn: The power to re-imagine the self. Communicatio 41:3, pages 264-286.
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Anna Harris, Sally Wyatt & Susan
E. Kelly. (2013) THE GIFT OF SPIT (AND THE OBLIGATION TO RETURN IT). Information, Communication & Society 16:2, pages 236-257.
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Gillian Bartlett, Jumana Antoun & Nathalie K Zgheib. (2012) Theranostics in primary care: pharmacogenomics tests and beyond. Expert Review of Molecular Diagnostics 12:8, pages 841-855.
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Jeantine
E. Lunshof & Ruth Chadwick. (2011) Editorial: Genetic and Genomic Research—Changing Patterns of Accountability. Accountability in Research 18:3, pages 121-131.
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Articles from other publishers (24)
Bianca Jansky & Henriette Langstrup. (2022) Device activism and material participation in healthcare: retracing forms of engagement in the #WeAreNotWaiting movement for open-source closed-loop systems in type 1 diabetes self-care. BioSocieties 18:3, pages 498-522.
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Mette B. Steffensen, Christina L. Matzen & Sarah Wadmann. (2022) Patient participation in priority setting: Co-existing participant roles. Social Science & Medicine 294, pages 114713.
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Lotje E. Siffels, Tamar Sharon & Andrew S. Hoffman. (2021) The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research. Humanities and Social Sciences Communications 8:1.
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Marko Lüftenegger, Lisa Bardach, Evelyn Bergsmann, Barbara Schober & Christiane Spiel. (2019) A citizen science approach to measuring students’ achievement goals. International Journal of Educational Research 95, pages 36-51.
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Marta Fadda, Anna Jobin, Alessandro Blasimme, Bastian Greshake Tzovaras, Mad Price Ball & Effy Vayena. (2018) User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study. JMIR Research Protocols 7:11, pages e10939.
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Mauro Turrini. (2018) Online Genomes: Problematizing the disruptiveness of direct-to-consumer genetic tests. Sociology Compass 12:11, pages e12633.
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Karen Dam Nielsen & Henriette Langstrup. (2018) Tactics of material participation: How patients shape their engagement through e-health. Social Studies of Science 48:2, pages 259-282.
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Christopher M. Kelty. (2017) Too Much Democracy in All the Wrong Places. Current Anthropology 58:S15, pages S77-S90.
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Sabine Salloch, Peter Ritter, Sebastian Wäscher, Jochen Vollmann & Jan Schildmann. (2016) Was ist ein ethisches Problem und wie finde ich es? Theoretische, methodologische und forschungspraktische Fragen der Identifikation ethischer Probleme am Beispiel einer empirisch-ethischen InterventionsstudieWhat is an ethical problem and how do I find it? Theoretical, methodological and practical questions to identify ethical problems in an empirical–ethical intervention study. Ethik in der Medizin 28:4, pages 267-281.
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Serena Oliveri, Gabriella Pravettoni, Chiara Fioretti & Mats G. Hansson. (2016) Let the Individuals Directly Concerned Decide: A Solution to Tragic Choices in Genetic Risk Information. Public Health Genomics 19:5, pages 307-313.
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Martin Boeckhout & Conor M.W. Douglas. (2015) Governing the research-care divide in clinical biobanking: Dutch perspectives. Life Sciences, Society and Policy 11:1.
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Christopher Kelty, Aaron Panofsky, Morgan Currie, Roderic Crooks, Seth Erickson, Patricia Garcia, Michael Wartenbe & Stacy Wood. (2015) Seven dimensions of contemporary participation disentangled. Journal of the Association for Information Science and Technology 66:3, pages 474-488.
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Jeantine Lunshof & Ruth Chadwick. 2014. The Right to Know and the Right Not to Know. The Right to Know and the Right Not to Know
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Fernando Martin Sanchez, Kathleen Gray, Riccardo Bellazzi & Guillermo Lopez-Campos. (2014) Exposome informatics: considerations for the design of future biomedical research information systems. Journal of the American Medical Informatics Association 21:3, pages 386-390.
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Barbara Prainsack. (2014) The Powers of Participatory Medicine. PLoS Biology 12:4, pages e1001837.
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Katrin Weigmann. (2014) Health research 2.0. EMBO reports 15:3, pages 223-226.
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Vural ÖzdemirEugene KolkerPeter J. HotezSophie MohinBarbara PrainsackBrian WynneEffy VayenaYavuz CoşkunTürkay DereliFarah HuzairAlexander Borda-RodriguezNicola Luigi BragazziJack FarisRaj RamesarAmbroise WonkamCollet DandaraBipin NairAdrián LLerenaKoray KılıçRekha JainPanga Jaipal ReddyKishore GollapalliSanjeeva SrivastavaIlona Kickbusch. (2014) Ready to Put Metadata on the Post-2015 Development Agenda? Linking Data Publications to Responsible Innovation and Science Diplomacy. OMICS: A Journal of Integrative Biology 18:1, pages 1-9.
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Georg LaussChristina SchröderPeter DabrockJohann EderKay HamacherKlaus A. KuhnHerbert Gottweis. (2013) Towards Biobank Privacy Regimes in Responsible Innovation Societies: ESBB Conference in Granada 2012. Biopreservation and Biobanking 11:5, pages 319-323.
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Sally Wyatt, Anna Harris, Samantha Adams & Susan E Kelly. (2013) Illness Online: Self-reported Data and Questions of Trust in Medical and Social Research. Theory, Culture & Society 30:4, pages 131-150.
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Sigrid Sterckx, Julian Cockbain, Heidi Howard, Isabelle Huys & Pascal Borry. (2013) “Trust is not something you can reclaim easily”: patenting in the field of direct-to-consumer genetic testing. Genetics in Medicine 15:5, pages 382-387.
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Effy Vayena & John Tasioulas. (2013) Adapting Standards: Ethical Oversight of Participant-Led Health Research. PLoS Medicine 10:3, pages e1001402.
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Effy VayenaAnna MastroianniJeffrey Kahn. (2012) Ethical Issues in Health Research With Novel Online Sources. American Journal of Public Health 102:12, pages 2225-2230.
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Alison Harvey, Angela Brand, Stephen T. Holgate, Lars V. Kristiansen, Hans Lehrach, Aarno Palotie & Barbara Prainsack. (2012) The future of technologies for personalised medicine. New Biotechnology 29:6, pages 625-633.
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C. S. Bloss, B. F. Darst, E. J. Topol & N. J. Schork. (2011) Direct-to-consumer personalized genomic testing. Human Molecular Genetics 20:R2, pages R132-R141.
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