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  1. Between Minimal and Greater Than Minimal Risk: How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-identification in Genomic Research.Sebastian Schleidgen, Alma Husedzinovic, Dominik Ose, Christoph Schickhardt, Christof Kalle & Eva Winkler - 2019 - Philosophy and Technology 32 (1):39-55.
    Data-sharing among genomic researchers is promoted for its potential to accelerate our understanding of the molecular basis of cancer. However, with genomic data sharing the risks of re-identifying study participants, revealing personal genomic information and data misuse might increase. This study aims at exploring perceptions of patients and physicians in Oncology regarding their assessment of the informational risks resulting from participating in whole genomic research studies in order to improve the informed consent process. For this purpose, we conducted a qualitative (...)
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  • Challenges and proposed solutions in making clinical research on COVID-19 ethical: a status quo analysis across German research ethics committees.Alice Faust, Anna Sierawska, Joerg Hasford, Anne Wisgalla, Katharina Krüger & Daniel Strech - 2021 - BMC Medical Ethics 22 (1):1-11.
    Background In the course of the COVID-19 pandemic, the biomedical research community’s attempt to focus the attention on fighting COVID-19, led to several challenges within the field of research ethics. However, we know little about the practical relevance of these challenges for Research Ethics Committees. Methods We conducted a qualitative survey across all 52 German RECs on the challenges and potential solutions with reviewing proposals for COVID-19 studies. We de-identified the answers and applied thematic text analysis for the extraction and (...)
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  • Between Minimal and Greater Than Minimal Risk: How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-identification in Genomic Research.Sebastian Schleidgen, Alma Husedzinovic, Dominik Ose, Christoph Schickhardt, Christof von Kalle & Eva C. Winkler - 2019 - Philosophy and Technology 32 (1):39-55.
    Data-sharing among genomic researchers is promoted for its potential to accelerate our understanding of the molecular basis of cancer. However, with genomic data sharing the risks of re-identifying study participants, revealing personal genomic information and data misuse might increase. This study aims at exploring perceptions of patients and physicians in Oncology regarding their assessment of the informational risks resulting from participating in whole genomic research studies in order to improve the informed consent process. For this purpose, we conducted a qualitative (...)
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  • Older Teens’ Understanding and Perceptions of Risks in Studies With Genetic Testing: A Pilot Study.Richard F. Ittenbach, Jeremy J. Corsmo, Robert V. Miller & Leslie L. Korbee - 2019 - AJOB Empirical Bioethics 10 (3):173-181.
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  • Priority, prediction and the ethical research enterprise.Spencer Phillips Hey - 2017 - Journal of Medical Ethics 43 (12):812-813.
    In their essay, ‘When Clinical Trials Compete: Prioritizing Study Recruitment’, Gelinas et al describe a collective action problem that can arise if multiple trials at a single institution are all trying to recruit participants from the same patient population. Each trial may be addressing an important question, and each will need a certain number of participants to provide an informative answer. But because these trials are all recruiting from the same population, it is possible that there will not be enough (...)
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