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  1. If you build it, they will come: unintended future uses of organised health data collections.Kieran C. O’Doherty, Emily Christofides, Jeffery Yen, Heidi Beate Bentzen, Wylie Burke, Nina Hallowell, Barbara A. Koenig & Donald J. Willison - 2016 - BMC Medical Ethics 17 (1):54.
    Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data (...)
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  • The Public Interest, Public Goods, and Third-Party Access to UK Biobank.B. Capps - 2012 - Public Health Ethics 5 (3):240-251.
    In 2007, the Ethics and Governance Council of the UK Biobank commissioned a Report on ‘Concepts of Public Good and Pubic Interest in Access Policies’. This study considered the Biobank’s role as a ‘public good’ in respect to supporting and promoting health throughout society. However, the conditions under which access by third parties to UK Biobank are justified in the public interest have not been well considered. In this article, I propose to analyse the conditions that should allow such access. (...)
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  • Forensic uses of research biobanks: should donors be informed?Vilius Dranseika, Jan Piasecki & Marcin Waligora - 2016 - Medicine, Health Care and Philosophy 19 (1):141-146.
    Occasional reports in the literature suggest that biological samples collected and stored for scientific research are sometimes accessed and used for a variety of forensic purposes. However, donors are almost never informed about this possibility. In this paper we argue that the possibility of forensic access may constitute a relevant consideration at least to some potential research subjects in deciding whether to participate in research. We make the suggestion that if some type of forensic access to research collections is likely (...)
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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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  • A comparative ethical analysis of the Egyptian clinical research law.Sylvia Martin, Mirko Ancillotti, Santa Slokenberga & Amal Matar - 2024 - BMC Medical Ethics 25 (1):1-14.
    Background In this study, we examined the ethical implications of Egypt’s new clinical trial law, employing the ethical framework proposed by Emanuel et al. and comparing it to various national and supranational laws. This analysis is crucial as Egypt, considered a high-growth pharmaceutical market, has become an attractive location for clinical trials, offering insights into the ethical implementation of bioethical regulations in a large population country with a robust healthcare infrastructure and predominantly treatment-naïve patients. Methods We conducted a comparative analysis (...)
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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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