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Researchers' Duty to Share Pre-publication Data: From the Prima Facie Duty to Practice

In Mittelstadt Brent & Floridi Luciano (eds.), The ethics of biomedical big data. Springer. pp. 309-337 (2016)

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  1. Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis.Christoph Schickhardt, Henrike Fleischer & Eva C. Winkler - 2020 - BMC Medical Ethics 21 (1):1-12.
    As Next Generation Sequencing technologies are increasingly implemented in biomedical research and care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients have a legal and moral right to receive their genomic raw data and, if so, how this right should be implemented into practice. In a first step we clarify some central concepts such as “raw data”; in a second (...)
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  • Promoting Data Sharing: The Moral Obligations of Public Funding Agencies.Christian Wendelborn, Michael Anger & Christoph Schickhardt - 2024 - Science and Engineering Ethics 30 (4):1-31.
    Sharing research data has great potential to benefit science and society. However, data sharing is still not common practice. Since public research funding agencies have a particular impact on research and researchers, the question arises: Are public funding agencies morally obligated to promote data sharing? We argue from a research ethics perspective that public funding agencies have several pro tanto obligations requiring them to promote data sharing. However, there are also pro tanto obligations that speak against promoting data sharing in (...)
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