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  1. Narrativization of human population genetics: Two cases in Iceland and Russia.Vadim Chaly & Olga V. Popova - 2024 - Public Understanding of Science 33 (3):370-386.
    Using the two cases of the Icelandic Health Sector Database and Russian initiatives in biobanking, the article criticizes the view of narratives and imaginaries as a sufficient and unproblematic means of shaping public understanding of genetics and justifying population-wide projects. Narrative representations of national biobanking engage particular imaginaries that are not bound by the universal normative framework of human rights, promote affective thinking, distract the public from recognizing and discussing tangible ethical and socioeconomic issues, and harm trust in science and (...)
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  • Equitable Access to Human Biological Resources in Developing Countries: Benefit Sharing Without Undue Inducement.Roger Scarlin Chennells - 2015 - Cham: Imprint: Springer.
    The main question explored by the book is: How can cross-border access to human genetic resources, such as blood or DNA samples, be governed in such a way as to achieve equity for vulnerable populations in developing countries? The book situates the field of genomic and genetic research within global health and research frameworks, describing the concerns that have been raised about the potential unfairness in exchanges during recent decades. Access to and sharing in the benefits of human biological resources (...)
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  • Patient data and patient rights: Swiss healthcare stakeholders’ ethical awareness regarding large patient data sets – a qualitative study.Corine Mouton Dorey, Holger Baumann & Nikola Biller-Andorno - 2018 - BMC Medical Ethics 19 (1):20.
    There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient’s rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare professionals, regulators and policy makers. (...)
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  • Toward Critical Bioethics.Vilhjálmur Árnason - 2015 - Cambridge Quarterly of Healthcare Ethics 24 (2):154-164.
    Abstract:This article deals with the question as to what makes bioethics a critical discipline. It considers different senses of criticism and evaluates their strengths and weaknesses. A primary method in bioethics as a philosophical discipline is critical thinking, which implies critical evaluation of concepts, positions, and arguments. It is argued that the type of analytical criticism that restricts its critical role to critical thinking of this type often suffers from other intellectual flaws. Three examples are taken to demonstrate this: premature (...)
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  • Clarifying ethical responsibilities in pediatric biobanking.Merle Spriggs & Craig L. Fry - unknown
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