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  1. Relevant Information and Informed Consent in Research: In Defense of the Subjective Standard of Disclosure.Vilius Dranseika, Jan Piasecki & Marcin Waligora - 2017 - Science and Engineering Ethics 23 (1):215-225.
    In this article, we seek to contribute to the debate on the requirement of disclosure in the context of informed consent for research. We defend the subjective standard of disclosure and describe ways to implement this standard in research practice. We claim that the researcher should make an effort to find out what kinds of information are likely to be relevant for those consenting to research. This invites researchers to take empirical survey information seriously, attempt to understand the cultural context, (...)
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  • Accessing medical biobanks to solve crimes: ethical considerations.Nina F. de Groot, Britta C. van Beers, Lieven Decock & Gerben Meynen - 2021 - Journal of Medical Ethics 47 (7):502-509.
    Millions of human biological samples are stored worldwide for medical research or treatment purposes. These biospecimens are of enormous potential value to law enforcement as DNA profiles can be obtained from these samples. However, forensic use of such biospecimens raises a number of ethical questions. This article aims to explore ethical issues of using human bodily material in medical biobanks for crime investigation and prosecution purposes. Concerns about confidentiality, trust, autonomy and justice will be discussed. We explore how to balance (...)
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  • Is decision-making capacity an “essentially contested” concept in pediatrics?Eva De Clercq, Katharina Ruhe, Michel Rost & Bernice Elger - 2017 - Medicine, Health Care and Philosophy 20 (3):425-433.
    Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit (...)
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  • Biobank consent under the GDPR: are potential sample donors informed about all lawful uses of biobank data?Emmi Kaaya - 2024 - Medicine, Health Care and Philosophy 27 (4):567-577.
    This paper analyses the information disclosures in two biobank consent documents used by biobanks operating under the General Data Protection Regulation (GDPR). The aim of the analysis is to investigate how these documents inform potential sample donors about possible future uses of biobank data. The findings suggest that the consent documents provide potentially misleading information regarding the range of possible future uses of biobank data. Based on these information disclosures, potential sample donors may reasonably believe that the data can only (...)
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