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  1. 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.
    The rise of precision medicine has led to an unprecedented focus on human biological material in biomedical research. In addition, rapid advances in stem cell technology, regenerative medicine and synthetic biology are leading to more complex human tissue structures and new applications with tremendous potential for medicine. While promising, these developments also raise several ethical and practical challenges which have been the subject of extensive academic debate. These debates have led to increasing calls for longitudinal governance arrangements between tissue providers (...)
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  • The ethics of uncertainty for data subjects.Philip Nickel - 2019 - In Peter Dabrock, Matthias Braun & Patrik Hummel (eds.), The Ethics of Medical Data Donation. Springer Verlag. pp. 55-74.
    Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. These emphasize increasing organizational flexibility, (...)
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  • Communicating Identifiability Risks to Biobank Donors.T. J. Kasperbauer, Mickey Gjerris, Gunhild Waldemar & Peter Sandøe - 2018 - Cambridge Quarterly of Healthcare Ethics 27 (1):123-136.
    Recent highly publicized privacy breaches in health care and genomics research have led many to question whether current standards of data protection are adequate. Improvements in de-identification techniques, combined with pervasive data sharing, have increased the likelihood that external parties can track individuals across multiple databases. This paper focuses on the communication of identifiability risks in the process of obtaining consent for donation and research. Most ethical discussions of identifiability risks have focused on the severity of the risk and how (...)
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  • Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project. [REVIEW]Sandi Dheensa, Gabrielle Samuel, Anneke M. Lucassen & Bobbie Farsides - 2018 - Journal of Medical Ethics 44 (6):397-403.
    Clinical practice and research are governed by distinct rules and regulations and have different approaches to, for example, consent and providing results. However, genomics is an example of where research and clinical practice have become codependent. The 100 000 genomes project is a hybrid venture where a person can obtain a clinical investigation only if he or she agrees to also participate in ongoing research—including research by industry and commercial companies. In this paper, which draws on 20 interviews with professional (...)
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