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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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  • Solidarity: A (New) Ethic for Global Health Policy. [REVIEW]Shawn H. E. Harmon - 2006 - Health Care Analysis 14 (4):215-236.
    This article explores solidarity as an ethical concept underpinning rules in the global health context. First, it considers the theoretical conceptualisation of the value and some specific duties it supports (ie: its expression in the broadest sense and its derivative action-guiding duties). Second, it considers the manifestation of solidarity in two international regulatory instruments. It concludes that, although solidarity is represented in these instruments, it is often incidental. This fact, their emphasis on other values and their internal weaknesses diminishes the (...)
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  • The informed consent aftermath of the genetic revolution. An Italian example of implementation.Federica Artizzu - 2008 - Medicine, Health Care and Philosophy 11 (2):181-190.
    A great part of human genetics research is carried out collecting data and building large databases of biological samples that are in a non-anonymous format. These constitute a valuable resource for future research. The construction of such databases and tissue banks facilitates important scientific progress. However, biobanks have been recognized as ethically problematic because they contain thousands of data that could expose individuals and populations to discrimination, stigmatization and psychological stress if misused. Informed consent is regarded as a cornerstone in (...)
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  • How the role of computing is driving new genetics public policy.Antonio Marturano & Ruth Chadwick - 2004 - Ethics and Information Technology 6 (1):43-53.
    In this paper we will examine some ethical aspects of the role that computers and computing increasingly play in new genetics. Our claim is that there is no new genetics without computer science. Computer science is important for the new genetics on two levels: from a theoretical perspective, and from the point of view of geneticists practice. With respect to , the new genetics is fully impregnate with concepts that are basic for computer science. Regarding , recent developments in the (...)
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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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  • DNA-Banken und Treuhandschaft [DNA Banking and Trusteeship].Doris Schröder & Garrath Williams - 2002 - Ethik in der Medizin 14 (2):84-95.
    Definition of the problem:The frequency and scope of human genetic banking has increased significantly in recent years and is set to expand still further. Two of the major growth areas in medical research, pharmacogenomics and population genetics, rely on large DNA banks to provide extensive, centralised and standardised genetic information as well as clinical and personal data. This development raises ethical concerns. Arguments and conclusion: Our article focuses on the appropriateness of informed consent as a means to safeguard both research (...)
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  • Informed consent in biobanking and genetic research.Antonio Casado da Rocha & Arantza Etxeberria Agiriano - 2008 - Arbor 184 (730).
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