- Big Data as Tracking Technology and Problems of the Group and its Members.Haleh Asgarinia - 2023 - In Kevin Macnish & Adam Henschke (eds.), The Ethics of Surveillance in Times of Emergency. Oxford University Press. pp. 60-75.details
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Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand.Phaik Yeong Cheah, Nattapat Jatupornpimol, Borimas Hanboonkunupakarn, Napat Khirikoekkong, Podjanee Jittamala, Sasithon Pukrittayakamee, Nicholas P. J. Day, Michael Parker & Susan Bull - 2018 - BMC Medical Ethics 19 (1):86.details
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From “Informed” to “Engaged” Consent: Risks and Obligations in Consent for Participation in a Health Data Repository.Elizabeth Bromley, Alexandra Mendoza-Graf, Sandra Berry, Camille Nebeker & Dmitry Khodyakov - 2020 - Journal of Law, Medicine and Ethics 48 (1):172-182.details
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Better governance starts with better words: why responsible human tissue research demands a change of language.Annelien L. Bredenoord, Sarah N. Boers, Karin R. Jongsma & Michael A. Lensink - 2022 - BMC Medical Ethics 23 (1):1-10.details
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Participatory improvement of a template for informed consent documents in biobank research - study results and methodological reflections.Bossert Sabine, Kahrass Hannes, Heinemeyer Ulrike, Prokein Jana & Strech Daniel - 2017 - BMC Medical Ethics 18 (1):78.details
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Public interest in health data research: laying out the conceptual groundwork.Angela Ballantyne & G. Owen Schaefer - 2020 - Journal of Medical Ethics 46 (9):610-616.details
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Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.Marieke A. R. Bak & Dick L. Willems - 2022 - Science and Engineering Ethics 28 (4):1-20.details
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Consent as a compositional act – a framework that provides clarity for the retention and use of data.Minerva C. Rivas Velarde, Christian Lovis, Marcello Ienca, Caroline Samer & Samia Hurst - 2024 - Philosophy, Ethics and Humanities in Medicine 19 (1):1-10.details
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Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin.Dick L. Willems, Hanno L. Tan, Marieke T. Blom, Rens Veeken & Marieke A. R. Bak - 2021 - BMC Medical Ethics 22 (1):1-15.details
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How to Design Consent for Health Data Research? An Analysis of Arguments of Solidarity.Svenja Wiertz - 2023 - Public Health Ethics 16 (3):261-270.details
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Evaluating models of consent in changing health research environments.Svenja Wiertz & Joachim Boldt - 2022 - Medicine, Health Care and Philosophy 25 (2):269-280.details
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Physicians’ communication patterns for motivating rectal cancer patients to biomarker research: Empirical insights and ethical issues.Sabine Wöhlke, Julia Perry & Silke Schicktanz - 2018 - Clinical Ethics 13 (4):175-188.details
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Adding dynamic consent to a longitudinal cohort study: A qualitative study of EXCEED participant perspectives.Susan E. Wallace & José Miola - 2021 - BMC Medical Ethics 22 (1):1-10.details
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Genomic Data-Sharing Practices.Angela G. Villanueva, Robert Cook-Deegan, Jill O. Robinson, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):31-40.details
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Moral autonomy of patients and legal barriers to a possible duty of health related data sharing.Anton Vedder & Daniela Spajić - 2023 - Ethics and Information Technology 25 (1):1-11.details
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Biomedical Big Data: New Models of Control Over Access, Use and Governance.Alessandro Blasimme & Effy Vayena - 2017 - Journal of Bioethical Inquiry 14 (4):501-513.details
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Data Medicine: ‘Broad’ or ‘Dynamic’ Consent?Henri-Corto Stoeklé, Elisabeth Hulier-Ammar & Christian Hervé - 2022 - Public Health Ethics 15 (2):181-185.details
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Public attitudes towards sharing loyalty card data for academic health research: a qualitative study.Anya Skatova, James Goulding, Kate Shiells & Elizabeth H. Dolan - 2022 - BMC Medical Ethics 23 (1):1-10.details
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Authority and the Future of Consent in Population-Level Biomedical Research.Mark Sheehan, Rachel Thompson, Jon Fistein, Jim Davies, Michael Dunn, Michael Parker, Julian Savulescu & Kerrie Woods - forthcoming - Public Health Ethics.details
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Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders.Stephen Molldrem, Anthony K. J. Smith & Vishnu Subrahmanyam - 2024 - AJOB Empirical Bioethics 15 (1):66-79.details
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Broad consent for biobanks is best – provided it is also deep.Rasmus Bjerregaard Mikkelsen, Mickey Gjerris, Gunhild Waldemar & Peter Sandøe - 2019 - BMC Medical Ethics 20 (1):1-12.details
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Going high and low: on pluralism and neutrality in human embryology policy-making.Hafez Ismaili M'hamdi, Nicolas C. Rivron & Eva C. A. Asscher - forthcoming - Journal of Medical Ethics.details
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Facing new challenges to informed consent processes in the context of translational research: the case in CARPEM consortium.Marie-France Mamzer, Anita Burgun, Cécile Badoual, Pierre Laurent-Puig & Elise Jacquier - 2021 - BMC Medical Ethics 22 (1):1-13.details
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Biobanking for human microbiome research: promise, risks, and ethics.Yonghui Ma, Hua Chen, Ruipeng Lei & Jianlin Ren - 2017 - Asian Bioethics Review 9 (4):311-324.details
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Towards Rawlsian ‘property-owning democracy’ through personal data platform cooperatives.Michele Loi, Paul-Olivier Dehaye & Ernst Hafen - 2023 - Critical Review of International Social and Political Philosophy 26 (6):769-787.details
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Organoid Biobanking, Autonomy and the Limits of Consent.Jonathan Lewis & Søren Holm - 2022 - Bioethics 36 (7):742-756.details
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Biobanks and Individual Health Related Findings: from an Obstacle to an Incentive.Jurate Lekstutiene, Søren Holm & Eugenijus Gefenas - 2021 - Science and Engineering Ethics 27 (4):1-16.details
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Identifying facilitators of and barriers to the adoption of dynamic consent in digital health ecosystems: a scoping review.Ah Ra Lee, Dongjun Koo, Il Kon Kim, Eunjoo Lee, Hyun Ho Kim, Sooyoung Yoo, Jeong-Hyun Kim, Eun Kyung Choi & Ho-Young Lee - 2023 - BMC Medical Ethics 24 (1):1-12.details
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Demonstrating ‘respect for persons’ in clinical research: findings from qualitative interviews with diverse genomics research participants.Stephanie A. Kraft, Erin Rothwell, Seema K. Shah, Devan M. Duenas, Hannah Lewis, Kristin Muessig, Douglas J. Opel, Katrina A. B. Goddard & Benjamin S. Wilfond - 2021 - Journal of Medical Ethics 47 (12):e8-e8.details
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Informed consent, genomic research and mental health: A integrative review.Nina Kilkku & Arja Halkoaho - 2022 - Nursing Ethics 29 (4):973-987.details
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Personalized and long-term electronic informed consent in clinical research: stakeholder views.Isabelle Huys, David Geerts, Pascal Borry & Evelien De Sutter - 2021 - BMC Medical Ethics 22 (1):1-12.details
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Citizens' views on sharing their health data: the role of competence, reliability and pursuing the common good.Samia Hurst-Majno, Pierre Chappuis, Monica Aceti, Claudine Burton-Jeangros, Petros Tsantoulis & Minerva C. Rivas Velarde - 2021 - BMC Medical Ethics 22 (1):1-12.details
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Taking it to the bank: the ethical management of individual findings arising in secondary research.Mackenzie Graham, Nina Hallowell, Berge Solberg, Ari Haukkala, Joanne Holliday, Angeliki Kerasidou, Thomas Littlejohns, Elizabeth Ormondroyd, John-Arne Skolbekken & Marleena Vornanen - 2021 - Journal of Medical Ethics 47 (10):689-696.details
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Can we know if donor trust expires? About trust relationships and time in the context of open consent for future data use.Felix Gille & Caroline Brall - 2022 - Journal of Medical Ethics 48 (3):184-188.details
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The role and nature of consent in government administrative data.Alexandra Eveleigh, Oliver Duke-Williams, Elizabeth Shepherd & Anna Sexton - 2018 - Big Data and Society 5 (2).details
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Meta-consent for the secondary use of health data within a learning health system: a qualitative study of the public’s perspective.Jean-François Ethier, Anne-Marie Cloutier, Nissrine Safa, Roxanne Dault, Adrien Barton & Annabelle Cumyn - 2021 - BMC Medical Ethics 22 (1):1-17.details
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Experimental Design: Ethics, Integrity and the Scientific Method.Jonathan Lewis - 2020 - In Ron Iphofen (ed.), Handbook of Research Ethics and Scientific Integrity. Cham, Switzerland: pp. 459-474.details
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Ethischer Diskurs zu Epigenetik und Genomeditierung: die Gefahr eines (epi-)genetischen Determinismus und naturwissenschaftlich strittiger Grundannahmen.Karla Karoline Sonne Kalinka Alex & Eva C. Winkler - 2021 - In Boris Fehse, Ferdinand Hucho, Sina Bartfeld, Stephan Clemens, Tobias Erb, Heiner Fangerau, Jürgen Hampel, Martin Korte, Lilian Marx-Stölting, Stefan Mundlos, Angela Osterheider, Anja Pichl, Jens Reich, Hannah Schickl, Silke Schicktanz, Jochen Taupitz, Jörn Walter, Eva Winkler & Martin Zenke (eds.), Fünfter Gentechnologiebericht: Sachstand und Perspektiven für Forschung und Anwendung. Baden-Baden, Deutschland.: Nomos. DOI: 10.5771/9783748927242. pp. 299-323.details
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